tag:blogger.com,1999:blog-217097052024-03-05T04:41:46.848-05:00Udo Schuklenk's Ethx BlogRules of engagement: 1) You do not have to register to leave comments on this blog. 2) I do not respond to anonymous comments. 3) I reserve the right to delete defamatory, racist, sexist or anti-gay comments. 4) I delete advertisements that slip thru the google spam folder as I see fit. udo schuklenkhttp://www.blogger.com/profile/16463788271983027260noreply@blogger.comBlogger850125tag:blogger.com,1999:blog-21709705.post-87796464259030656362022-07-06T09:40:00.000-04:002022-07-06T09:40:38.968-04:00Ethical Progress on the Abortion Care Frontiers on the African Continent <p><span style="font-size: small;"><span style="font-family: arial;"><span style="line-height: 107%;">The Supreme Court of the United States of America has
overridden 50 years of legal precedent and reversed constitutional protections<a href="#_edn1" name="_ednref1" title=""><span class="MsoEndnoteReference"><span><span class="MsoEndnoteReference"><span style="line-height: 107%;">[i]</span></span></span></span></a> for abortion in the
country that were the result of the 1973 landmark Roe v Wade ruling. Pregnant
women in the country do not enjoy a constitutional right to abortion any
longer. Broadly speaking the result of this ruling results in a split of the
country in terms of access to abortion care based on whether a woman lives in a
Republican party controlled state or a Democratic party controlled state. The
verdict has been widely condemned by associations of health care professionals,
medical journals and the like, as much as it was celebrated by religious
leaders like the Pope.<a href="#_edn2" name="_ednref2" title=""><span class="MsoEndnoteReference"><span><span class="MsoEndnoteReference"><span style="line-height: 107%;">[ii]</span></span></span></span></a>,<a href="#_edn3" name="_ednref3" title=""><span class="MsoEndnoteReference"><span><span class="MsoEndnoteReference"><span style="line-height: 107%;">[iii]</span></span></span></span></a> None of that is terribly
surprising. </span></span></span><span style="font-size: small;"><span style="font-family: arial;">
</span></span></p><p class="MsoNormal"><span style="font-size: small;"><span style="font-family: arial;"><span style="line-height: 107%;">Among secular bioethicists support for liberal access
to abortion care has always been strong. The main ethical reasons for this have
to do with respecting women’s rights to control over their own bodies<a href="#_edn4" name="_ednref4" title=""><span class="MsoEndnoteReference"><span><span class="MsoEndnoteReference"><span style="line-height: 107%;">[iv]</span></span></span></span></a>, as well as consequentialist
ethical reasons that take cognizance of worse health care outcomes for the most
vulnerable women in societies where restrictive access to abortion care regimes
are in place<a href="#_edn5" name="_ednref5" title=""><span class="MsoEndnoteReference"><span><span class="MsoEndnoteReference"><span style="line-height: 107%;">[v]</span></span></span></span></a>.
The liberalization of laws on abortion, on the other hand, has demonstrably led
to improved health outcomes for these women.<a href="#_edn6" name="_ednref6" title=""><span class="MsoEndnoteReference"><span><span class="MsoEndnoteReference"><span style="line-height: 107%;">[vi]</span></span></span></span></a> The ethical arguments on
abortion have been debated endlessly by bioethicists, there is little point in
rehashing them here in any great detail<a href="#_edn7" name="_ednref7" title=""><span class="MsoEndnoteReference"><span><span class="MsoEndnoteReference"><span style="line-height: 107%;">[vii]</span></span></span></span></a>. </span></span></span></p><span style="font-size: small;"><span style="font-family: arial;">
</span></span><p class="MsoNormal"><span style="font-size: small;"><span style="font-family: arial;"><span style="line-height: 107%;">What is perhaps worth noting is that – unlike in the
United States – access to abortion care has become in recent years easier in a
number of countries on the African continent, including some of its very
poorest. Much of this is the result of the so-called Maputo Protocol, or, more
formally, the African Union’s Protocol to the African Charter on Human and
Peoples’ Rights on the Rights of Women in Africa.<a href="#_edn8" name="_ednref8" title=""><span class="MsoEndnoteReference"><span><span class="MsoEndnoteReference"><span style="line-height: 107%;">[viii]</span></span></span></span></a> Since the Maputo Protocol
came into effect in 2005, seven sub Saharan countries have taken steps to
liberalise their abortion related legislation in order to bring their laws in
line with the Protocol. To give just a few examples, since 2012 Benin is
permitting abortion care even for economic and social reasons up to the 12<sup>th</sup>
week after conception. Cape Verde permits abortion on demand up to the 12<sup>th</sup>
week after conception, too. The Democratic Republic of Congo has taken to
publishing the full text of the Protocol in the government gazette, thereby
making it law.<a href="#_edn9" name="_ednref9" title=""><span class="MsoEndnoteReference"><span><span class="MsoEndnoteReference"><span style="line-height: 107%;">[ix]</span></span></span></span></a>
The result of this have been truly sweeping changes liberalizing the country’s
abortion regime. Sierra Leone’s government introduced a bill in the country’s
parliament that would, if passed, decriminalize abortion, and expand access to
contraceptives as well as other reproductive health services. While this won’t
change the country’s staggeringly high maternal deaths’ rate of around 10% over
night, that is a result of unsafe abortion practices, it is an important start
to bring about much needed change.<a href="#_edn10" name="_ednref10" title=""><span class="MsoEndnoteReference"><span><span class="MsoEndnoteReference"><span style="line-height: 107%;">[x]</span></span></span></span></a> </span></span></span></p><span style="font-size: small;"><span style="font-family: arial;">
</span></span><p class="MsoNormal"><span style="font-size: small;"><span style="font-family: arial;"><span style="line-height: 107%;">Much more needs to be done on the continent as well as
elsewhere in the global south. Access to abortion care is an essential feature
of quality reproductive health care, but while it is arguably a necessary
condition, it certainly is not sufficient. As Moodley and Akinsooto point out,
even in a country like South Africa, with its liberal abortion care regime,
‘there is a need to place more emphasis on the delivery of efficient
contraceptive services and reproductive health education for women.’<a href="#_edn11" name="_ednref11" title=""><span class="MsoEndnoteReference"><span><span class="MsoEndnoteReference"><span style="line-height: 107%;">[xi]</span></span></span></span></a> I’m tempted to add here,
‘and men’. Unsurprisingly, in the United States the same political actors who support
the reversal of Roe vs Wade are also keen to make access to contraceptives more
difficult.<a href="#_edn12" name="_ednref12" title=""><span class="MsoEndnoteReference"><span><span class="MsoEndnoteReference"><span style="line-height: 107%;">[xii]</span></span></span></span></a>
The legal tool of choice is conscientious objection accommodation.<a href="#_edn13" name="_ednref13" title=""><span class="MsoEndnoteReference"><span><span class="MsoEndnoteReference"><span style="line-height: 107%;">[xiii]</span></span></span></span></a>,<a href="#_edn14" name="_ednref14" title=""><span class="MsoEndnoteReference"><span><span class="MsoEndnoteReference"><span style="line-height: 107%;">[xiv]</span></span></span></span></a> Women’s health and
well-being continue to remain secondary considerations in ideologies that
motivate forced birth policy commitments. </span></span></span></p>
<div style="mso-element: endnote-list;"><br clear="all" />
<hr align="left" size="1" width="33%" />
<div id="edn1" style="mso-element: endnote;">
<p class="MsoEndnoteText"><a href="#_ednref1" name="_edn1" style="mso-endnote-id: edn1;" title=""><span class="MsoEndnoteReference"><span style="mso-special-character: footnote;"><span class="MsoEndnoteReference"><span style="font-family: "Calibri",sans-serif; font-size: 10.0pt; line-height: 107%; mso-ansi-language: EN-US; mso-ascii-theme-font: minor-latin; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">[i]</span></span></span></span></a> <a href="https://www.supremecourt.gov/opinions/21pdf/19-1392_6j37.pdf">https://www.supremecourt.gov/opinions/21pdf/19-1392_6j37.pdf</a>
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<p></p>udo schuklenkhttp://www.blogger.com/profile/16463788271983027260noreply@blogger.comtag:blogger.com,1999:blog-21709705.post-40055102166850712052022-05-18T09:15:00.000-04:002022-05-18T09:15:41.697-04:00Argumenta ad passiones: Canada Debates Access Thresholds to MAiD<p> <!--[if gte mso 9]><xml>
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<w:LsdException Locked="false" Priority="9" SemiHidden="true"
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<w:LsdException Locked="false" Priority="9" SemiHidden="true"
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<w:LsdException Locked="false" Priority="9" SemiHidden="true"
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<w:LsdException Locked="false" Priority="9" SemiHidden="true"
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<w:LsdException Locked="false" Priority="9" SemiHidden="true"
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<w:LsdException Locked="false" Priority="9" SemiHidden="true"
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<w:LsdException Locked="false" Priority="9" SemiHidden="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" Priority="39" SemiHidden="true"
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<w:LsdException Locked="false" Priority="39" SemiHidden="true"
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<w:LsdException Locked="false" Priority="39" SemiHidden="true"
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<w:LsdException Locked="false" Priority="39" SemiHidden="true"
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<w:LsdException Locked="false" Priority="39" SemiHidden="true"
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<w:LsdException Locked="false" Priority="39" SemiHidden="true"
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<w:LsdException Locked="false" Priority="39" SemiHidden="true"
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<w:LsdException Locked="false" Priority="39" SemiHidden="true"
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<w:LsdException Locked="false" Priority="39" SemiHidden="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" Priority="35" SemiHidden="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" Priority="1" SemiHidden="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" Priority="62" Name="Light Grid"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1"/>
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<w:LsdException Locked="false" SemiHidden="true" Name="Revision"/>
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<w:LsdException Locked="false" Priority="30" QFormat="true"
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<w:LsdException Locked="false" Priority="60" Name="Light Shading Accent 6"/>
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<w:LsdException Locked="false" Priority="62" Name="Light Grid Accent 6"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1 Accent 6"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2 Accent 6"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1 Accent 6"/>
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<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1 Accent 6"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2 Accent 6"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3 Accent 6"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List Accent 6"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading Accent 6"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 6"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 6"/>
<w:LsdException Locked="false" Priority="19" QFormat="true"
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<w:LsdException Locked="false" Priority="21" QFormat="true"
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<w:LsdException Locked="false" Priority="31" QFormat="true"
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<w:LsdException Locked="false" Priority="32" QFormat="true"
Name="Intense Reference"/>
<w:LsdException Locked="false" Priority="33" QFormat="true" Name="Book Title"/>
<w:LsdException Locked="false" Priority="37" SemiHidden="true"
UnhideWhenUsed="true" Name="Bibliography"/>
<w:LsdException Locked="false" Priority="39" SemiHidden="true"
UnhideWhenUsed="true" QFormat="true" Name="TOC Heading"/>
<w:LsdException Locked="false" Priority="41" Name="Plain Table 1"/>
<w:LsdException Locked="false" Priority="42" Name="Plain Table 2"/>
<w:LsdException Locked="false" Priority="43" Name="Plain Table 3"/>
<w:LsdException Locked="false" Priority="44" Name="Plain Table 4"/>
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</p><p class="MsoNormal">Canada’s parliament is reviewing its MAiD (medical assistance
in dying) legislation. This is because there were some issues left to be
addressed in the future when the country initial decriminalised MAiD. It is
also conducting a global review because more than five years have passed since
MAiD became legal in Canada and it is time to review how things are going
elsewhere. The purpose of this commentary is not to go into the legal details of
the discussion, this is better left to legal minds, but to focus on some of the
salient ethical issues that appear to motivate another round of heated
arguments between those in favour of restrictive access criteria and those supporting
a more liberal approach to MAiD access. </p>
<p class="MsoNormal">Proponents of restrictive access criteria rightly point to
the fact that – historically – arguments in favour of MAiD oftentimes went
along the lines that a terminally ill patient with unbearable pain could only find
relief if their request for MAiD would be granted. The paradigmatic cases were
late-stage cancer patients, and, indeed, it is this group of patients that
still makes up the majority of MAiD cases in most jurisdictions, including Canada.
It is noteworthy that Canada’s Supreme Court in its landmark decision that decriminalised
assisted dying did not base its judgment on that rationale. Terminal illness
was never an access threshold in the country. Here are the access criteria laid
out in the Supreme Court’s judgment:</p>
<p class="MsoNormal" style="margin-left: 36.0pt;">Section 241 (b) and s. 14 of the
Criminal Code unjustifiably infringe s. 7 of the Charter and are of no force or
effect to the extent that they prohibit physician-assisted death for a
competent adult person who (1) clearly consents to the termination of life and
(2) has a grievous and irremediable medical condition (including an illness,
disease or disability) that causes enduring suffering that is intolerable to
the individual in the circumstances of his or her condition.<a href="#_ftn1" name="_ftnref1" style="mso-footnote-id: ftn1;" title=""><span class="MsoFootnoteReference"><span style="mso-special-character: footnote;"><span class="MsoFootnoteReference"><span style="font-family: "Calibri",sans-serif; font-size: 11.0pt; line-height: 107%; mso-ansi-language: EN-CA; mso-ascii-theme-font: minor-latin; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">[1]</span></span></span></span></a>
(para 147)</p>
<p class="MsoNormal">Some of the criteria here were in part a result of findings
that indicate that the motives that lead to MAiD requests are oftentimes not the
result of insufficient pain management, they have to do with one’s life being
unbearable, and with there being no end in sight with regard to that kind of
suffering. Pain is only one possible contributing factor here, if oftentimes an
important one. If the disease conditions that lead to such a dire life
situation are intractable but not terminal patients are arguably worse off than
those who do suffer from a terminal illness, because potentially they could be
forced to suffer unbearably for many decades.<span style="mso-spacerun: yes;">
</span>This suggests that pro-choice campaigns that focus solely on the pain
experienced by some terminally ill patients are misguided. </p>
<p class="MsoNormal">What ethically justifies making MAiD available for
decisionally capable patients is a combination of societal respect for
self-regarding autonomous choice and an informed decision by a patient that their
life is unbearable as a result of a particular intractable illness, disease, or
disability. That illness may be cancer in some cases, it may be depression in
other cases, it may also be some kind of disability. </p>
<p class="MsoNormal">Some of the arguments that excite Canadians currently are peculiar to the country. One such argument is the claim that the
pending liberalisation of access criteria demonstrates that slippery slope
concerns by opponents of MAiD were well-founded. After all, less than a decade
since the Supreme Court judgment more groups of patients will become eligible
for MAiD. In most other situations where these are the facts of the matter advocates
of liberal and restrictive MAiD access policies would debate questions such as
whether an increase of people eligible to access MAiD constitutes a slippery
slope or not. To some the mere increase would be evidence of a slippery slope,
to others the increase would be a sign of a maturing access system that’s
fine-tuned, quite deliberately so, in order to meet patient needs. It’s
probably fair to say that the philosophical technical term ‘slippery slope’ has
taken on a life of its own in Canadian public MAiD discourse. It’s fairly
liberally attached to situations one wants to criticise. </p>
<p class="MsoNormal">In Canada these arguments would be missing an important fact:
The starting point of Canada’s MAiD policies was the earlier quoted Supreme
Court judgment that prescribed arguably liberal access criteria. It was
followed by unconstitutional government legislation introducing a restrictive
regime. Current attempts aimed at fixing this legislation would merely take the
country back closer to where its MAiD journey began, namely the Supreme Court’s
criteria. Strangely, proponents of restrictive access criteria choose to start
with the unconstitutional legislation, then pointing to a widening of access
criteria as evidence of a slippery slope, while ignoring the actual starting
point, namely the framework provided in the Supreme Court judgment.<a href="#_ftn2" name="_ftnref2" style="mso-footnote-id: ftn2;" title=""><span class="MsoFootnoteReference"><span style="mso-special-character: footnote;"><span class="MsoFootnoteReference"><span style="font-family: "Calibri",sans-serif; font-size: 11.0pt; line-height: 107%; mso-ansi-language: EN-CA; mso-ascii-theme-font: minor-latin; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">[2]</span></span></span></span></a>
</p>
<p class="MsoNormal">Of course, one would expect academic proponents of slippery
slope arguments to be aware of this history. I do wonder, for that reason,
whether the deployment of such arguments is aimed at understandable anxieties
about risks attached to the introduction of MAiD among people less familiar
with these chronological details. Perhaps these argumenta ad passiones are more
about effective political campaign strategies than they are about the facts of
the matter. </p>
<p class="MsoNormal">Another example of this are attempts to exploit the dire
straits that some patients find themselves in in the service of anti-choice
activism. Ostensibly the concern is about protecting vulnerable patients, but
in reality these efforts translate into removing the agency of decisionally
capable patients without offering them a way out of their predicament. Patients
ultimately would be worse off if this activism succeeded. </p>
<p class="MsoNormal">Consider this case that made the news both in Canada<a href="#_ftn3" name="_ftnref3" style="mso-footnote-id: ftn3;" title=""><span class="MsoFootnoteReference"><span style="mso-special-character: footnote;"><span class="MsoFootnoteReference"><span style="font-family: "Calibri",sans-serif; font-size: 11.0pt; line-height: 107%; mso-ansi-language: EN-CA; mso-ascii-theme-font: minor-latin; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">[3]</span></span></span></span></a>
as well as internationally<a href="#_ftn4" name="_ftnref4" style="mso-footnote-id: ftn4;" title=""><span class="MsoFootnoteReference"><span style="mso-special-character: footnote;"><span class="MsoFootnoteReference"><span style="font-family: "Calibri",sans-serif; font-size: 11.0pt; line-height: 107%; mso-ansi-language: EN-CA; mso-ascii-theme-font: minor-latin; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">[4]</span></span></span></span></a>.
I encourage you to study the two news reports as they are good examples of
campaign journalism versus factual reporting. Reportedly a woman on disability
benefits who experienced severe sensitivities to chemicals chose MAiD, because
her efforts aimed at moving into special housing suitable for her needs failed.
It has been suggested that it is not the case that she badly wanted to end her
life, but rather that she considered her quality of life unbearable as a result
of her inability to access more suitable housing. There are more details to
this case than were revealed in the media coverage and it is certainly not the
case that her decision turned solely on housing. <span style="mso-spacerun: yes;"> </span>Regardless, there are certainly good reasons
to empathise with the deceased and to be critical of government agencies’
failure to accommodate her. </p>
<p class="MsoNormal">On a conceptual level this case might seem to be an example
of types of cases where arguably social determinants of health play a
significant role in patients’ requests for MAiD. Proponents of restrictive
access regimes use such cases to appeal again to anxieties about abuses in
liberal MAiD regimes. This can be found in views<a href="#_ftn5" name="_ftnref5" style="mso-footnote-id: ftn5;" title=""><span class="MsoFootnoteReference"><span style="mso-special-character: footnote;"><span class="MsoFootnoteReference"><span style="font-family: "Calibri",sans-serif; font-size: 11.0pt; line-height: 107%; mso-ansi-language: EN-CA; mso-ascii-theme-font: minor-latin; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">[5]</span></span></span></span></a>
expressed along this line: ‘it’s easier to receive MAiD in Canada than adequate
housing for the poor.’ The hope behind the statement is that the listener will
be suitably offended by this and joins the campaign for a restrictive MAiD
access regime. </p>
<p class="MsoNormal">These argumenta ad passiones are flawed. For one thing, on a
regulatory level, Canadian MAiD legislation operates at federal government
level, while health- and social care is a provincial responsibility. Any
suggestion then that these liberal access criteria are designed to reduce
health- and social care costs ignores the division of responsibilities for the
delivery of health care. Furthermore, and this is arguably the more important ethical
question: How would this patient have been any better off for not being able to
choose MAiD, given her circumstances?<span style="mso-spacerun: yes;"> </span>It’s
only right to criticise government for not providing adequate housing for
people like the woman in this case, but it does not follow that therefore she
should not be able to access MAiD. In fact, in Canada, the level of government
responsible for MAiD legislation is not even in a position to address the
housing issue. </p>
<p class="MsoNormal">The same argumenta ad passiones come into play when it comes
to the question of whether decisionally capable people with mental illnesses
should be able to access MAiD. The arguments here follow the by-now-familiar
pattern. They appeal again to anxieties, on this occasion about abuse inflicted
on vulnerable psychiatric patients, flag the dismal state of mental health
services and move from there to campaigning against granting
decisionally-capable people with mental illnesses access to MAiD. Of course, in
reality even state of the art best psychiatric care fails a significant number
of psychiatric patients with refractory conditions. It also remains true what I
pointed out already in the case of the woman with severe sensitivities to
chemicals, namely: how would a psychiatric patient who is failed by an
unresponsive health care system be any better off for having their ability
removed to request and receive MAiD if they meet ethically defensible access
thresholds? The health care system will be no more responsive. One also has to
wonder how proponents of such arguments square their activism with decade-long
attempts to destigmatise mental illness, given that their primary objective
here seems to be to remove these patients’ agency when such patients make
choices they happen to find disagreeable.</p>
<div style="mso-element: footnote-list;"><br clear="all" />
<hr align="left" size="1" width="33%" />
<div id="ftn1" style="mso-element: footnote;">
<p class="MsoFootnoteText"><a href="#_ftnref1" name="_ftn1" style="mso-footnote-id: ftn1;" title=""><span class="MsoFootnoteReference"><span style="mso-special-character: footnote;"><span class="MsoFootnoteReference"><span style="font-family: "Calibri",sans-serif; font-size: 10.0pt; line-height: 107%; mso-ansi-language: EN-CA; mso-ascii-theme-font: minor-latin; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">[1]</span></span></span></span></a>
Carter v. Canada (Attorney General) 2015 SCC 5.</p>
</div>
<div id="ftn2" style="mso-element: footnote;">
<p class="MsoFootnoteText"><a href="#_ftnref2" name="_ftn2" style="mso-footnote-id: ftn2;" title=""><span class="MsoFootnoteReference"><span style="mso-special-character: footnote;"><span class="MsoFootnoteReference"><span style="font-family: "Calibri",sans-serif; font-size: 10.0pt; line-height: 107%; mso-ansi-language: EN-CA; mso-ascii-theme-font: minor-latin; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">[2]</span></span></span></span></a> <a href="https://jme.bmj.com/content/medethics/early/2021/08/03/medethics-2021-107493.full.pdf">Social
determinants of health and slippery slopes in assisted dying debates: lessons
from Canada (bmj.com)</a></p>
</div>
<div id="ftn3" style="mso-element: footnote;">
<p class="MsoFootnoteText"><a href="#_ftnref3" name="_ftn3" style="mso-footnote-id: ftn3;" title=""><span class="MsoFootnoteReference"><span style="mso-special-character: footnote;"><span class="MsoFootnoteReference"><span style="font-family: "Calibri",sans-serif; font-size: 10.0pt; line-height: 107%; mso-ansi-language: EN-CA; mso-ascii-theme-font: minor-latin; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">[3]</span></span></span></span></a> <a href="https://www.ctvnews.ca/health/woman-with-chemical-sensitivities-chose-medically-assisted-death-after-failed-bid-to-get-better-housing-1.5860579">Medical
assistance in dying: Woman with chemical sensitivities chose death | CTV News</a></p>
</div>
<div id="ftn4" style="mso-element: footnote;">
<p class="MsoFootnoteText"><a href="#_ftnref4" name="_ftn4" style="mso-footnote-id: ftn4;" title=""><span class="MsoFootnoteReference"><span style="mso-special-character: footnote;"><span class="MsoFootnoteReference"><span style="font-family: "Calibri",sans-serif; font-size: 10.0pt; line-height: 107%; mso-ansi-language: EN-CA; mso-ascii-theme-font: minor-latin; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">[4]</span></span></span></span></a> <a href="https://www.theguardian.com/world/2022/may/11/canada-cases-right-to-die-laws">Are
Canadians being driven to assisted suicide by poverty or healthcare crisis? |
Canada | The Guardian</a></p>
</div>
<div id="ftn5" style="mso-element: footnote;">
<p class="MsoFootnoteText"><a href="#_ftnref5" name="_ftn5" style="mso-footnote-id: ftn5;" title=""><span class="MsoFootnoteReference"><span style="mso-special-character: footnote;"><span class="MsoFootnoteReference"><span style="font-family: "Calibri",sans-serif; font-size: 10.0pt; line-height: 107%; mso-ansi-language: EN-CA; mso-ascii-theme-font: minor-latin; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">[5]</span></span></span></span></a> <a href="https://alethonews.com/2022/05/02/how-canada-is-cutting-costs-by-euthanizing-their-poor/">How
Canada is ‘Cutting Costs’ by Euthanizing their Poor « Aletho News</a></p>
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udo schuklenkhttp://www.blogger.com/profile/16463788271983027260noreply@blogger.comtag:blogger.com,1999:blog-21709705.post-6862292034367090342021-08-19T10:57:00.004-04:002021-08-19T10:57:44.035-04:00Access to mental health care – a profound ethical problem in the global south<p><span style="background-color: white; color: #1c1d1e; font-family: "Open Sans", sans-serif; font-size: 16px;">From <a href="https://onlinelibrary.wiley.com/doi/10.1111/dewb.12300">Developing World Bioethics</a></span></p><p><span style="background-color: white; color: #1c1d1e; font-family: "Open Sans", sans-serif; font-size: 16px;">As I write this on October 10, 2020 World Mental Health Day is upon us once again. The global picture of the suffering that mental health problems visit upon humanity remains as grim today as it does in every other year. Neuropsychiatric disorders remain stubbornly the third leading global cause of disability-adjusted life-years. Reliable access to mental health care, when it is needed, remains a significant problem even in the global north, but those problems pale into insignificance when compared against the situation in much of the global south. According to WHO data about 75% of people with mental health problems in the global south receive no treatment for their illness.</span><a aria-controls="dewb12300-note-1001_note_0" aria-expanded="true" aria-haspopup="false" aria-label="Note 1" class="noteLink scrollableLink" href="https://onlinelibrary-wiley-com.proxy.queensu.ca/doi/10.1111/dewb.12300#dewb12300-note-1001_note_0" id="dewb12300-note-1001_note_0-controller" style="box-sizing: border-box; color: #005274; cursor: pointer; display: inline; font-family: "Open Sans", sans-serif; font-size: 0.875rem; font-style: unset; font-weight: 600; margin-left: -3px; padding: 5px 0px; position: relative; top: -7px;" title="Link to note">1</a><span style="background-color: white; color: #1c1d1e; font-family: "Open Sans", sans-serif; font-size: 16px;"> </span><span style="background-color: white; color: #1c1d1e; font-family: "Open Sans", sans-serif; font-size: 16px;">The disruption of health services, courtesy of the global response to COVID-19, has resulted in already unreliable and insufficient access to health care under ‘normal’ circumstances turning into no access for many. That has impacted patients seeking relief from mental illness-related suffering disproportionately. The disregard for the suffering mental illness causes in the global south is also reflected in global health aid allocations to this problem. As far as global health aid is concerned, only about 1% of international development assistance for health is earmarked for mental health. Considering the much higher contribution to disability-adjusted life years impact that mental illnesses make, this does raise questions of distributive resource allocation justice.</span></p><p style="background-color: white; box-sizing: border-box; color: #1c1d1e; font-family: "Open Sans", sans-serif; font-size: 16px; line-height: 24px; margin-bottom: 16px; margin-top: 5px; overflow-wrap: break-word;">Human Rights Watch recently released a landmark report that shines a light on how countries in the global south respond to patients with mental illness related needs. They often put them in chains or shackle them in confined spaces. The human rights group quotes ‘Paul’, a patient who has been chained in a ‘faith healing’ institution in Kenya: ‘I’ve been chained for five years. The chain is so heavy. It doesn’t feel right; it makes me sad. I stay in a small room with seven men. I’m not allowed to wear clothes, only underwear. I have to go to the toilet in a bucket. I eat porridge in the morning and if I’m lucky, I find bread at night, but not every night…. It’s not how a human being is supposed to be. A human being should be free.’<a aria-controls="dewb12300-note-1002_note_1" aria-expanded="true" aria-haspopup="false" aria-label="Note 2" class="noteLink scrollableLink" href="https://onlinelibrary-wiley-com.proxy.queensu.ca/doi/10.1111/dewb.12300#dewb12300-note-1002_note_1" id="dewb12300-note-1002_note_1-controller" style="background-color: transparent; box-sizing: border-box; color: #005274; cursor: pointer; display: inline; font-size: 0.875rem; font-style: unset; font-weight: 600; margin-left: -3px; padding: 5px 0px; position: relative; top: -7px;" title="Link to note">2</a> – Whatever ‘Paul’s' mental health issues may be, he is right. If he is a service user who does require permanent care, this surely isn’t the type of care that he is owed. Unsurprisingly, one explanation for the abuse that ‘Paul’ is subjected to has to do with the fact that ‘in many countries around the world, there is a widespread belief that mental health conditions are the result of possession by evil spirits or the devil, having sinned, displaying immoral behaviour, or having a lack of faith. Therefore, people first consult faith or traditional healers and often only seek medical advice as a last resort.’<a aria-controls="dewb12300-note-1003_note_2" aria-expanded="true" aria-haspopup="false" aria-label="Note 3" class="noteLink scrollableLink" href="https://onlinelibrary-wiley-com.proxy.queensu.ca/doi/10.1111/dewb.12300#dewb12300-note-1003_note_2" id="dewb12300-note-1003_note_2-controller" style="background-color: transparent; box-sizing: border-box; color: #005274; cursor: pointer; display: inline; font-size: 0.875rem; font-style: unset; font-weight: 600; margin-left: -3px; padding: 5px 0px; position: relative; top: -7px;" title="Link to note">3</a></p><p style="background-color: white; box-sizing: border-box; color: #1c1d1e; font-family: "Open Sans", sans-serif; font-size: 16px; line-height: 24px; margin-bottom: 16px; margin-top: 5px; overflow-wrap: break-word;">I reported in an Editorial in this journal last year about questionable research in such ‘faith healing’ institutions.<a aria-controls="dewb12300-note-1004_note_3" aria-expanded="true" aria-haspopup="false" aria-label="Note 4" class="noteLink scrollableLink" href="https://onlinelibrary-wiley-com.proxy.queensu.ca/doi/10.1111/dewb.12300#dewb12300-note-1004_note_3" id="dewb12300-note-1004_note_3-controller" style="background-color: transparent; box-sizing: border-box; color: #005274; cursor: pointer; display: inline; font-size: 0.875rem; font-style: unset; font-weight: 600; margin-left: -3px; padding: 5px 0px; position: relative; top: -7px;" title="Link to note">4</a> The research was undertaken with the best of intentions,it aimed to reduce the number of people with mental health issues living in chains in such ‘healing’ outfits. The researchers tried to show that other methods, involving actual professional care, are superior to mere praying while-in-chains. While they were able to show that, apparently little has changed since then. Human Rights Watch reports that shackling occurs today in at least 60 countries across Asia, Africa, Europe, the Middle East, and the Americas.</p><p style="background-color: white; box-sizing: border-box; color: #1c1d1e; font-family: "Open Sans", sans-serif; font-size: 16px; line-height: 24px; margin-bottom: 16px; margin-top: 5px; overflow-wrap: break-word;">I would urge bioethics researchers to focus at least some of their valuable attention on the plight of the global south’s mentally ill people and their need to access professional health care. It’s unlikely to capture as much public attention as the much-discussed question of how to allocate a prospective COVID-19 vaccine, but it’s arguably of greater importance.</p>udo schuklenkhttp://www.blogger.com/profile/16463788271983027260noreply@blogger.comtag:blogger.com,1999:blog-21709705.post-17182099809017251242021-08-19T10:54:00.001-04:002021-08-19T10:54:22.267-04:00From the chimera research frontiers: Ethics of monkey–human embryos<p><span style="background-color: white; color: #1c1d1e; font-family: "Open Sans", sans-serif; font-size: 16px;">From <a href=" https://doi.org/10.1111/bioe.12888">Bioethics</a></span></p><p><span style="background-color: white; color: #1c1d1e; font-family: "Open Sans", sans-serif; font-size: 16px;"><br /></span></p><p><span style="background-color: white; color: #1c1d1e; font-family: "Open Sans", sans-serif; font-size: 16px;">It was just a matter of time after the successful creation of pig and cow embryos grown with human cells that some researcher somewhere would think it might be worth trying to find out whether it is possible to grow more closely related monkey embryos with human cells, and so they did.</span><a aria-controls="bioe12888-note-1001_note_0" aria-expanded="true" aria-haspopup="false" aria-label="Note 1" class="noteLink scrollableLink" href="https://onlinelibrary-wiley-com.proxy.queensu.ca/doi/10.1111/bioe.12888#bioe12888-note-1001_note_0" id="bioe12888-note-1001_note_0-controller" style="box-sizing: border-box; color: #005274; cursor: pointer; display: inline; font-family: "Open Sans", sans-serif; font-size: 0.875rem; font-style: unset; font-weight: 600; margin-left: -3px; padding: 5px 0px; position: relative; top: -7px;" title="Link to note">1</a><span style="background-color: white; color: #1c1d1e; font-family: "Open Sans", sans-serif; font-size: 16px;"> </span><span style="background-color: white; color: #1c1d1e; font-family: "Open Sans", sans-serif; font-size: 16px;">The experiment reportedly has not been a straightforward runaway success, but, of 132 monkey embryos injected with human extended pluripotent stem cells, three embryos were still alive at day 19. The low success rate may be a consequence of the fact that the researchers, led by a stem cell biologist at the Salk Institute, have not quite figured out yet how to manipulate which cells grow into which kind of tissue.</span></p><p style="background-color: white; box-sizing: border-box; color: #1c1d1e; font-family: "Open Sans", sans-serif; font-size: 16px; line-height: 24px; margin-bottom: 16px; margin-top: 5px; overflow-wrap: break-word;">The primary objective of such research is not to develop more human-like monkeys, or more monkey-like humans, but to create new pathways towards making new organs for transplant purposes. This does raise interesting ethical questions. First among them is the question of what the moral status of such chimeras would be, should they ever be birthed. Then there are other issues, such as whether such research is itself ethically defensible, seeing that its primary objective is to—essentially—create a new source of organs for humans. Would it be ethically acceptable to create highly developed monkey–human chimeras only to kill them in order to extract organs for xenotransplantation purposes? Arguably the shortage of organs for transplant purposes can be addressed by changing how we go about sourcing them. Options available to us range from paying prospective donors for their organs to making it more difficult for those opposed to the use of their organs after their demise to opt out. Creating a new class of highly developed chimeras for xenotransplantation purposes does not appear to be necessary to achieve what is otherwise an uncontroversially desirable objective.</p><p style="background-color: white; box-sizing: border-box; color: #1c1d1e; font-family: "Open Sans", sans-serif; font-size: 16px; line-height: 24px; margin-bottom: 16px; margin-top: 5px; overflow-wrap: break-word;">What about the uncertainty about moral status mentioned earlier? Let us assume that at least one of the remaining embryos could be successfully implanted (something not planned by this research team) and carried to term. What would be the moral status of the newborn chimera, seeing that it is a hybrid made up of both monkey and human cells? Those of us not hung up on species membership will focus on the capabilities of the newborn and base our answer to the moral status question on those capabilities. Is there sentience? Then inflicting pain and suffering on it matters morally. If, as was the case when human glia cells were injected into mice brains, mental capacities turned out to increase as a result of the monkey–human stem cell mix,<a aria-controls="bioe12888-note-1002_note_1" aria-expanded="true" aria-haspopup="false" aria-label="Note 2" class="noteLink scrollableLink" href="https://onlinelibrary-wiley-com.proxy.queensu.ca/doi/10.1111/bioe.12888#bioe12888-note-1002_note_1" id="bioe12888-note-1002_note_1-controller" style="background-color: transparent; box-sizing: border-box; color: #005274; cursor: pointer; display: inline; font-size: 0.875rem; font-style: unset; font-weight: 600; margin-left: -3px; padding: 5px 0px; position: relative; top: -7px;" title="Link to note">2</a> then the moral status of the chimeras should rise. What matters for the determination of your moral status should be your capabilities, not how those capabilities came about. If anything, such a finding should give us further cause to reconsider using such chimeras as a convenient solution to our organ-shortage problem.</p><p style="background-color: white; box-sizing: border-box; color: #1c1d1e; font-family: "Open Sans", sans-serif; font-size: 16px; line-height: 24px; margin-bottom: 16px; margin-top: 5px; overflow-wrap: break-word;">Julian Savulescu and Julian Koplin have considered a different solution. They propose a two-step solution: ‘Firstly, the cells which cause human brain development should be knocked out through gene editing, if possible. And secondly, the live-born chimeras should not immediately be “used”, instead, they are allowed to develop in social groups and are studied for their cognitive capacities and potential for non-verbal communication’.<a aria-controls="bioe12888-note-1003_note_2" aria-expanded="true" aria-haspopup="false" aria-label="Note 3" class="noteLink scrollableLink" href="https://onlinelibrary-wiley-com.proxy.queensu.ca/doi/10.1111/bioe.12888#bioe12888-note-1003_note_2" id="bioe12888-note-1003_note_2-controller" style="background-color: transparent; box-sizing: border-box; color: #005274; cursor: pointer; display: inline; font-size: 0.875rem; font-style: unset; font-weight: 600; margin-left: -3px; padding: 5px 0px; position: relative; top: -7px;" title="Link to note">3</a> This strategy would permit us to study the chimeras carefully, and make a considered determination of what their moral status is, and of what is and what is not morally owed to them.</p><p style="background-color: white; box-sizing: border-box; color: #1c1d1e; font-family: "Open Sans", sans-serif; font-size: 16px; line-height: 24px; margin-bottom: 16px; margin-top: 5px; overflow-wrap: break-word;">Of course, those opposed to the use of non-human primates for research purposes will likely be opposed to their use as living human organ banks, too, whether they are primate–human chimeras or ‘just’ primates. We do not need to rehearse those ethical arguments here, as readers of the journal will be very familiar with them.<a aria-controls="bioe12888-note-1004_note_3" aria-expanded="true" aria-haspopup="false" aria-label="Note 4" class="noteLink scrollableLink" href="https://onlinelibrary-wiley-com.proxy.queensu.ca/doi/10.1111/bioe.12888#bioe12888-note-1004_note_3" id="bioe12888-note-1004_note_3-controller" style="background-color: transparent; box-sizing: border-box; color: #005274; cursor: pointer; display: inline; font-size: 0.875rem; font-style: unset; font-weight: 600; margin-left: -3px; padding: 5px 0px; position: relative; top: -7px;" title="Link to note">4</a> Berna Sozen, a stem cell biologist at Yale University, is quoted as saying that ‘it is really hard to say that it will ever be possible to grow organs for transplantation by creating these animal–human chimeras, but this research should continue for us to understand whether we will ever achieve this’.<a aria-controls="bioe12888-note-1005_note_4" aria-expanded="true" aria-haspopup="false" aria-label="Note 5" class="noteLink scrollableLink" href="https://onlinelibrary-wiley-com.proxy.queensu.ca/doi/10.1111/bioe.12888#bioe12888-note-1005_note_4" id="bioe12888-note-1005_note_4-controller" style="background-color: transparent; box-sizing: border-box; color: #005274; cursor: pointer; display: inline; font-size: 0.875rem; font-style: unset; font-weight: 600; margin-left: -3px; padding: 5px 0px; position: relative; top: -7px;" title="Link to note">5</a> My view would be that it serves no apparent purpose to find out, if one is not also prepared to use such chimeras as mere means-type vessels carrying organs for transplant purposes. That seems difficult to justify.</p>udo schuklenkhttp://www.blogger.com/profile/16463788271983027260noreply@blogger.comtag:blogger.com,1999:blog-21709705.post-715691775293277792021-08-19T10:49:00.005-04:002021-08-19T10:49:38.275-04:00Disability, mental illness, and medical assistance in dying in Canada: Recent slippery slope and social determinants of health arguments miss the mark<p><span style="background-color: white; color: #333333; font-family: interfaceregular, "Helvetica Neue", Arial, sans-serif; font-size: 16px;"><a href="https://blogs.bmj.com/medical-ethics/2021/08/09/disability-mental-illness-and-medical-assistance-in-dying-in-canada-recent-slippery-slope-and-social-determinants-of-health-arguments-miss-the-mark/">Cross posted from JME blog.</a> </span></p><p><span style="background-color: white; color: #333333; font-family: interfaceregular, "Helvetica Neue", Arial, sans-serif; font-size: 16px;">By Jocelyn Downie and Udo Schuklenk</span></p><p style="background-color: white; box-sizing: inherit; color: #333333; font-family: interfaceregular, "Helvetica Neue", Arial, sans-serif; font-size: 16px; margin-bottom: 1rem; margin-top: 0px;">In its 2015 landmark <a href="https://scc-csc.lexum.com/scc-csc/scc-csc/en/item/14637/index.do" style="background-color: transparent; box-sizing: inherit; color: #2a6ebb; text-decoration-line: none; touch-action: manipulation;"><em style="box-sizing: inherit;">Carter</em></a> decision, Canada’s Supreme Court ruled that the blanket criminalisation of medical assistance in dying (MAiD) unjustifiably infringes on Canadians’ rights and declared that the prohibitions were:</p><blockquote style="background-color: white; box-sizing: inherit; color: #333333; font-family: interfaceregular, "Helvetica Neue", Arial, sans-serif; font-size: 16px; margin: 0px 0px 1rem; padding-left: 1.25em; padding-right: 1.25em;"><p style="box-sizing: inherit; font-family: georgia, serif; font-style: italic; margin-bottom: 1rem; margin-top: 0px;">“of no force or effect to the extent that they prohibit physician-assisted death for a competent adult person who (1) clearly consents to the termination of life and (2) has a grievous and irremediable medical condition (including an illness, disease or disability) that causes enduring suffering that is intolerable to the individual in the circumstances of his or her condition.”</p></blockquote><p style="background-color: white; box-sizing: inherit; color: #333333; font-family: interfaceregular, "Helvetica Neue", Arial, sans-serif; font-size: 16px; margin-bottom: 1rem; margin-top: 0px;">The ruling’s eligibility criteria meant that someone who requested MAiD did not have to be suffering from a terminal illness. For instance, some patients suffering non-lethal intractable mental illnesses or disabilities could be eligible to request and receive MAiD.</p><p style="background-color: white; box-sizing: inherit; color: #333333; font-family: interfaceregular, "Helvetica Neue", Arial, sans-serif; font-size: 16px; margin-bottom: 1rem; margin-top: 0px;">Canada’s Parliament responded 16 months later with legislation (<a href="https://www.parl.ca/DocumentViewer/en/42-1/bill/C-14/royal-assent" style="background-color: transparent; box-sizing: inherit; color: #2a6ebb; text-decoration-line: none; touch-action: manipulation;">Bill C-14</a>) defining persons with a grievous and irremediable medical condition thus:</p><blockquote style="background-color: white; box-sizing: inherit; color: #333333; font-family: interfaceregular, "Helvetica Neue", Arial, sans-serif; font-size: 16px; margin: 0px 0px 1rem; padding-left: 1.25em; padding-right: 1.25em;"><p style="box-sizing: inherit; font-family: georgia, serif; font-style: italic; margin-bottom: 1rem; margin-top: 0px;">“(a) they have a serious and incurable illness, disease or disability; (b) they are in an advanced state of irreversible decline in capability; (c) that illness, disease or disability or that state of decline causes them enduring physical or psychological suffering that is intolerable to them and that cannot be relieved under conditions that they consider acceptable; and (d) their natural death has become reasonably foreseeable, taking into account all of their medical circumstances, without a prognosis necessarily having been made as to the specific length of time that they have remaining.”</p></blockquote><p style="background-color: white; box-sizing: inherit; color: #333333; font-family: interfaceregular, "Helvetica Neue", Arial, sans-serif; font-size: 16px; margin-bottom: 1rem; margin-top: 0px;">With this narrow definition, the country’s political leaders demonstrated an unwillingness to fully reflect the Supreme Court’s boundaries of permissibility in the regulatory regime they sought to introduce, despite warnings during parliamentary hearings by <a href="https://ipolitics.ca/2016/06/06/charter-expert-hogg-says-c-14-unconstitutional/" style="background-color: transparent; box-sizing: inherit; color: #2a6ebb; text-decoration-line: none; touch-action: manipulation;">constitutional law experts</a> that the Bill was inconsistent with both the judgment and the <a href="https://www.canada.ca/en/canadian-heritage/services/how-rights-protected/guide-canadian-charter-rights-freedoms.html" style="background-color: transparent; box-sizing: inherit; color: #2a6ebb; text-decoration-line: none; touch-action: manipulation;">Canadian Constitution</a>. The Canadian Senate unsuccessfully tried to amend the Bill to remove the unconstitutional provisions. Predictably, within days of the Bill passing it was challenged in court in <a href="https://bccla.org/our_work/lamb-v-canada-case-documents/" style="background-color: transparent; box-sizing: inherit; color: #2a6ebb; text-decoration-line: none; touch-action: manipulation;">British Columbia</a> and Quebec. The <a href="https://www.canlii.org/en/qc/qccs/doc/2019/2019qccs3792/2019qccs3792.html?searchUrlHash=AAAAAQANdHJ1Y2hvbiBnbGFkdQAAAAAB&resultIndex=1" style="background-color: transparent; box-sizing: inherit; color: #2a6ebb; text-decoration-line: none; touch-action: manipulation;">Quebec trial court agreed</a> with the plaintiffs, declaring that the “reasonably foreseeable” eligibility criterion violated their constitutional rights, including that it unjustifiably discriminated against persons with disabilities (and others whose natural death was not reasonably foreseeable) by preventing them from accessing MAiD.</p><p style="background-color: white; box-sizing: inherit; color: #333333; font-family: interfaceregular, "Helvetica Neue", Arial, sans-serif; font-size: 16px; margin-bottom: 1rem; margin-top: 0px;">The Canadian government chose not to appeal this decision (<a href="https://www.ourcommons.ca/DocumentViewer/en/43-2/house/sitting-64/hansard" style="background-color: transparent; box-sizing: inherit; color: #2a6ebb; text-decoration-line: none; touch-action: manipulation;">publicly acknowledging</a> that it was sound and that they would lose on appeal) and <a href="https://parl.ca/DocumentViewer/en/43-2/bill/C-7/first-reading" style="background-color: transparent; box-sizing: inherit; color: #2a6ebb; text-decoration-line: none; touch-action: manipulation;">proposed Bill C-7</a> to bring its legislation in line with constitutional requirements. The Bill removed “natural death has become reasonably foreseeable” as an eligibility criterion for MAiD, so persons with disabilities as their sole underlying medical condition could access MAiD. However, persons with a mental illness as their sole underlying medical condition could not because the government added an exclusion criterion – for the purposes of the “serious and incurable illness, disease or disability” provision in the legislation, mental illness is not considered an “illness, disease or disability.” However, <a href="https://parl.ca/DocumentViewer/en/43-2/bill/C-7/royal-assent" style="background-color: transparent; box-sizing: inherit; color: #2a6ebb; text-decoration-line: none; touch-action: manipulation;">Parliament added a sunset clause</a> to this exclusion so in March 2023 there will automatically no longer be a blanket exclusion of people with mental disorders as their sole underlying condition.</p><p style="background-color: white; box-sizing: inherit; color: #333333; font-family: interfaceregular, "Helvetica Neue", Arial, sans-serif; font-size: 16px; margin-bottom: 1rem; margin-top: 0px;">As Bill C-7 was being considered by Parliament, there was a heated debate about the inclusion of people with disabilities and mental illnesses as their sole underlying conditions. Commentators invoked slippery slope arguments and arguments grounded in concerns about the role of social determinants of health in MAiD requests. These deserve a response.</p><h5 style="background-color: white; box-sizing: inherit; clear: both; color: #333333; font-family: interfaceregular, "Helvetica Neue", Arial, sans-serif; font-size: 1.25rem; font-weight: 500; line-height: 1.1; margin-bottom: 0.5rem; margin-top: 0px;">Slippery slopes</h5><p style="background-color: white; box-sizing: inherit; color: #333333; font-family: interfaceregular, "Helvetica Neue", Arial, sans-serif; font-size: 16px; margin-bottom: 1rem; margin-top: 0px;"><a href="https://bccatholic.ca/news/canada/opponents-decry-bill-c-7-as-prime-example-of-slippery-slope" style="background-color: transparent; box-sizing: inherit; color: #2a6ebb; text-decoration-line: none; touch-action: manipulation;">Some argued</a> that making MAiD available to people with mental illnesses or disabilities as their sole underlying condition was evidence of a slippery slope, as predicted by opponents of MAiD when the initial legislation came into effect. They argued that because the change from C-14 to C-7 moved Canada in a more permissive direction, it was evidence of an – in their view – unwanted slide down a slippery slope.</p><p style="background-color: white; box-sizing: inherit; color: #333333; font-family: interfaceregular, "Helvetica Neue", Arial, sans-serif; font-size: 16px; margin-bottom: 1rem; margin-top: 0px;">However, slippery slope claims vis-à-vis today’s law take a narrowly composed snapshot that fails to capture the entire scene. Yes, the change from C-14 to C-7 moved Canada in a more permissive direction. However, that ignores where Canada was before C-14. The change from the Supreme Court 2015 criteria to 2016’s C-14 moved Canada in a restrictive direction. Canada did not become more permissive between <em style="box-sizing: inherit;">Carter</em> and Bill C-7. Rather, Canada unconstitutionally restricted the eligibility criteria for a few years, but today the country is back where the Supreme Court of Canada put it in its decision.</p><h5 style="background-color: white; box-sizing: inherit; clear: both; color: #333333; font-family: interfaceregular, "Helvetica Neue", Arial, sans-serif; font-size: 1.25rem; font-weight: 500; line-height: 1.1; margin-bottom: 0.5rem; margin-top: 0px;">Social determinants of health</h5><p style="background-color: white; box-sizing: inherit; color: #333333; font-family: interfaceregular, "Helvetica Neue", Arial, sans-serif; font-size: 16px; margin-bottom: 1rem; margin-top: 0px;">Some disability rights activists opposed to the proposed reforms to Canada’s legislation argued that it is never the disability or the mental illness that renders a person’s life not worth living to the person, but rather it is the person’s social determinants of health. On this view, people with disabilities or mental illness as their sole underlying medical conditions seek MAiD because their suffering is caused, not by their condition, but rather by the absence of reliable support services when they are needed or poverty, homelessness, and other social determinants of health. <a href="https://tvndy.ca/en/2020/11/testimony-to-senate-legal-and-constitutional-affairs-committee/" style="background-color: transparent; box-sizing: inherit; color: #2a6ebb; text-decoration-line: none; touch-action: manipulation;">These activists argue</a>, persons with disabilities or mental illnesses as their sole underlying condition should be ineligible for MAiD until the disparities in the social determinants of health are fully remedied.</p><p style="background-color: white; box-sizing: inherit; color: #333333; font-family: interfaceregular, "Helvetica Neue", Arial, sans-serif; font-size: 16px; margin-bottom: 1rem; margin-top: 0px;">These arguments disrespect the lived experience of some people with disabilities or severe mental illness who report that their suffering is caused by their condition and not by social determinants of health. These arguments also fail to recognize that: some people with disabilities or severe mental illness seeking MAiD are privileged and not lacking with respect to the social determinants of health; and some people with disabilities or severe mental illness have good access to all possible treatments. A collective’s vulnerability tied to the social determinants of health cannot be used to justify overriding an individual’s right to choose.</p><p style="background-color: white; box-sizing: inherit; color: #333333; font-family: interfaceregular, "Helvetica Neue", Arial, sans-serif; font-size: 16px; margin-bottom: 1rem; margin-top: 0px;">Even if one accepts (as we do) that supports and services for persons with mental illnesses and disabilities should be dramatically improved, it still does not follow that a patient who is unwilling to tolerate their situation any longer should be stripped of their agency to request MAiD. Removing such patients’ agency to make such decisions condemns such patients to potentially very long periods of excruciating suffering, in an attempt to improve a particular health care system – reducing these patients to a mere means used to achieve another, worthy, objective. The decision to partake in such activism should be a person’s voluntary and deliberate choice. It should not be a result of holding decisionally-capable people hostage to the project of reform.</p><p style="background-color: white; box-sizing: inherit; color: #333333; font-family: interfaceregular, "Helvetica Neue", Arial, sans-serif; font-size: 16px; margin-bottom: 1rem; margin-top: 0px;">Furthermore, many people with disabilities support access to MAiD for persons with disabilities. The <a href="https://www.ipsos.com/sites/default/files/ct/news/documents/2021-02/maid_in_canada-factum-2021-02-25-v1.pdf" style="background-color: transparent; box-sizing: inherit; color: #2a6ebb; text-decoration-line: none; touch-action: manipulation;">available polling</a> demonstrates that. And it should not be ignored that the <a href="https://arvayfinlay.ca/joseph-j-arvay-oc-qc/in-memoriam" style="background-color: transparent; box-sizing: inherit; color: #2a6ebb; text-decoration-line: none; touch-action: manipulation;">lead counsel in <em style="box-sizing: inherit;">Carter</em></a>, the <a href="https://sencanada.ca/en/senators/petitclerc-chantal/" style="background-color: transparent; box-sizing: inherit; color: #2a6ebb; text-decoration-line: none; touch-action: manipulation;">sponsor of Bill C-7</a>, and the <a href="https://www.cbc.ca/news/canada/montreal/medically-assisted-dying-law-overturned-quebec-1.5280702" style="background-color: transparent; box-sizing: inherit; color: #2a6ebb; text-decoration-line: none; touch-action: manipulation;">plaintiffs in the Quebec case</a> were all persons with disabilities – vehemently arguing that denying this group access to MAiD is stigmatizing, strongly paternalistic, and unjustly discriminatory.</p><h5 style="background-color: white; box-sizing: inherit; clear: both; color: #333333; font-family: interfaceregular, "Helvetica Neue", Arial, sans-serif; font-size: 1.25rem; font-weight: 500; line-height: 1.1; margin-bottom: 0.5rem; margin-top: 0px;">Looking forward</h5><p style="background-color: white; box-sizing: inherit; color: #333333; font-family: interfaceregular, "Helvetica Neue", Arial, sans-serif; font-size: 16px; margin-bottom: 1rem; margin-top: 0px;">Canada clearly has a permissive MAiD regime. Its legislation embodies a regime that respects the rights of each individual autonomous person with a mental illness or disability causing them enduring and intolerable suffering to choose to end that suffering through MAiD.</p><p style="background-color: white; box-sizing: inherit; color: #333333; font-family: interfaceregular, "Helvetica Neue", Arial, sans-serif; font-size: 16px; margin-bottom: 1rem; margin-top: 0px;">Paper title: <a href="https://jme.bmj.com/content/early/2021/08/03/medethics-2021-107493" style="background-color: transparent; box-sizing: inherit; color: #2a6ebb; text-decoration-line: none; touch-action: manipulation;">Social determinants of health and slippery slopes in assisted dying debates: lessons from Canada</a></p><p style="background-color: white; box-sizing: inherit; color: #333333; font-family: interfaceregular, "Helvetica Neue", Arial, sans-serif; font-size: 16px; margin-bottom: 1rem; margin-top: 0px;">Authors: Jocelyn Downie and <span style="box-sizing: inherit; font-size: 1rem;">Udo Schuklenk</span></p><p style="background-color: white; box-sizing: inherit; color: #333333; font-family: interfaceregular, "Helvetica Neue", Arial, sans-serif; font-size: 16px; margin-bottom: 1rem; margin-top: 0px;">Affiliations:</p><p style="background-color: white; box-sizing: inherit; color: #333333; font-family: interfaceregular, "Helvetica Neue", Arial, sans-serif; font-size: 16px; margin-bottom: 1rem; margin-top: 0px;">JD: School of Law, Dalhousie; University Schulich School of Law, Halifax, Nova Scotia, Canada</p><p style="background-color: white; box-sizing: inherit; color: #333333; font-family: interfaceregular, "Helvetica Neue", Arial, sans-serif; font-size: 16px; margin-bottom: 1rem; margin-top: 0px;">US: <span style="box-sizing: inherit; font-size: 1rem;">Department </span>of Philosophy, Queen’s University, Kingston K7L 3N6, Ontario, Canada udo. schuklenk@ pm. me</p><p style="background-color: white; box-sizing: inherit; color: #333333; font-family: interfaceregular, "Helvetica Neue", Arial, sans-serif; font-size: 16px; margin-bottom: 1rem; margin-top: 0px;">Competing interests: None declared.</p><p style="background-color: white; box-sizing: inherit; color: #333333; font-family: interfaceregular, "Helvetica Neue", Arial, sans-serif; font-size: 16px; margin-bottom: 1rem; margin-top: 0px;">Social media accounts of post authors:</p><p style="background-color: white; box-sizing: inherit; color: #333333; font-family: interfaceregular, "Helvetica Neue", Arial, sans-serif; font-size: 16px; margin-bottom: 1rem; margin-top: 0px;">Jocelyn Downie twitter <a href="https://twitter.com/jgdownie?lang=en" style="background-color: transparent; box-sizing: inherit; color: #2a6ebb; text-decoration-line: none; touch-action: manipulation;">@jgdownie</a></p><p style="background-color: white; box-sizing: inherit; color: #333333; font-family: interfaceregular, "Helvetica Neue", Arial, sans-serif; font-size: 16px; margin-bottom: 1rem; margin-top: 0px;">Udo Schuklenk twitter <a href="https://twitter.com/schuklenk" style="background-color: transparent; box-sizing: inherit; color: #2a6ebb; text-decoration-line: none; touch-action: manipulation;">@schuklenk</a></p>udo schuklenkhttp://www.blogger.com/profile/16463788271983027260noreply@blogger.comtag:blogger.com,1999:blog-21709705.post-12654448946758619502021-08-19T10:46:00.005-04:002021-08-19T10:46:45.595-04:00On the role of academic journals during infectious disease outbreaks<div>Academic researchers, naturally, are keen to contribute productively to the biomedical as well as social challenges caused by the current outbreak of SARS-CoV-2. Some of us do this by talking to the overwhelmed editors of newsoutlets' opinion pages, who are currently drowning in COVID19 pitches. Others are sufficiently well-known to government bureaucracies that they receive invitations to contribute their competence in the development of any number of policies and guidance documents. <br /></div><div><br /></div><div>Most of us, though, given that we cannot quite escape COVID19 at the moment anyway, have begun producing COVID19 research outputs. Journal editors across disciplines face an unprecedented onslaught of article submissions, many of which written very recently, and typically they consist of results of biomedical or survey research, economic modelling, analyses of the experiences made in countries like China and Italy. In my own field people are concerned about normative aspects of triage policies, privacy aspects of prevention strategies, challenge trials, equity, and so on and so forth. <br /></div><div><br /></div><div>What many of these article submissions have in common is that the authors hope to contribute to working through the current outbreak. I wonder whether academic journals, and the peer review and production processes we currently have in place for them, make them suitable outlets for those sorts of activities.</div><div><br /></div><div>Most global publishers have developed technological means that permit the digital, on-line first publication of accepted content. These publications precede print publication, oftentimes by months. Many smaller academic publishers, especially many smaller university presses do not possess that capability. Anything submitted to them will not be published until, realistically, the end of this year. By most accounts that would be too late to have any impact on the current outbreak. <br /></div><div><br /></div><div>Let's have a closer look at a typical submission-to-decision-to-publication situation with a global publisher. Say you submit on April 01 (I know, the joke is on me). If the editor of the journal moves quickly, they will decided within a day or two whether they will have the paper reviewed. So, they'd send out reviewer requests. Normally those invited would have a week or so to reply and decide on whether they're ok with doing the review. Takes us to April 10. Say, given the urgency, the first invitee agrees to review the content. They've anywhere between 2-4 weeks to submit their review. Some, with prodding, might be prepared to move faster on COVID19 papers, but given the deluge of papers submitted, their willingness might sooner rather than later wear thin. <br /></div><div><br /></div><div>We are now around the end of April. The reviews require that some changes are made before the paper is publishable. Let's assume that you're an efficient author, so you send the revised manuscript back to the editor. We're around May 10-15. The editor takes until May 20 to review the changes and accepts your manuscript. The paper is exported to the publisher's production people. After about 10 days you will see your proofs. You correct the proofs and return them to the publisher. Realistically, we're looking at the end of May. The publisher takes another week or so to make the necessary corrections and uploads your manuscript. So, in an ideal world, from submission to publication of your paper about 6 weeks would have passed. The odds are that you'd be looking at 8-12 weeks. <br /></div><div><br /></div><div>The pandemic you have been responding to will have moved on to a very different stage to what your paper aimed to respond to.<br /></div><div><br /></div><div>Some publisher offer to upload accepted manuscripts prior to copy editing and proof production, and replace them with the final version when it's ready. While this is faster, it also means that mistakes that would be caught during the copy editing process would be published and can even be cited, only to find that, in the actual published version, the mistake has been fixed. <br /></div><div><br /></div><div>The upshot of this is the following: With the exception of very few topflight biomedical journals the academic publishing process is too slow to respond meaningfully to ongoing infectious disease outbreaks. The fault for this lies not only in still fairly slow and cumbersome production processes of academic publishers, but also, and arguably more so, on the time it takes to maintain sound peer review. <br /></div><div><br /></div><div>What this suggests to me is this: If you plan on submitting content that is designed as an intervention in the currently ongoing outbreak, reconsider that. The pandemic will long have moved on from what was urgent at the time when you submitted your paper. Academic journals are not a sound target for your output. There might be alternative outlets, like, for instance the<a href="https://blogs.bmj.com/medical-ethics/"> Journal of medical ethics blogs</a>. I suspect in your field you might also have outlets for non-reviewed content, like SSRN, where you can upload your content while you wait for your paper to run through the peer review and production processes. <br /></div><div><br /></div><div>Focus on lessons that we can learn for future outbreaks.</div><div><br /></div><div><br /></div>udo schuklenkhttp://www.blogger.com/profile/16463788271983027260noreply@blogger.comtag:blogger.com,1999:blog-21709705.post-24726191768966439342020-03-16T12:35:00.000-04:002020-03-16T13:05:42.502-04:00COVID19 and the ethics of hospital triage decision-making<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">There is a lot of talk these days about the predicted coming wave of COVID19 patients needing ICU beds and ventilators in particular, and the inevitable need to prioritise in terms of access. Based on what I'm reading I am somewhat reassured that the right decision criteria will be deployed. Medicine, as always when it comes to the crunch, moves speedily from publicly professed deontological values and handwaving right to consequentialist, if not outright utilitarian, decision-making. That is a good thing. <b>You want to use your limited available resource to maximise the number of life-years preserved.</b> It'll mean, among many other things, that you need to prioritize looking after infected health care workers first (incidentally, that doesn't include clinical ethicists :). It'll also mean to remove people who would need long-term intensive care from beds that could otherwise be utilised by a larger number of patients with better odds of faster recovery. This will be a big challenge for health care professionals who put much store in the acts and omissions doctrine, thinking mistakenly that they're less responsible for the death of someone they omitted to admit to an ICU bed, even though they could have chosen to move a patient with worse odds out of that bed. You are responsible for the choices you make, an act of omission is still an act that you are morally responsible for. </span></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">What makes this less straightforward in practice than it looks like is that what 'the odds' are will inevitably change over time, as health care professionals begin gathering information about what does and doesn't work. This is something we saw during the Ebola virus outbreak of 2014/15. Death rates were staggeringly high and went down considerably as a result of the experience and knowledge gained by the attending health care workers. A case in point, the limited currently available evidence suggests that the vast majority of people who get on ventilators die anyway (the two papers that I have seen peg the mortality rate between 86%-97%), so the current debate about lack of ventilators might be a lot of noise about nothing. I wouldn't be surprised, however, if that changed over time, so this is something that makes allocation decisions more difficult, as the decision-making needs to be continuously updated, based on the rapidly accumulating evidence. Now, while this may well lead to different practical decisions, the normative criteria used to evaluate that evidence should remain pretty stable. </span></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">The really important bit though is that hospitals, by now, should have <b>transparent </b>resource allocation decision frameworks in place. They should have communicated those to their staff and made clear that to them that those criteria are binding on everyone. They should also <b>communicate those criteria to the public.</b> Nothing breeds suspicion, conspiracy theories and panic better than non-transparent decision-making procedures in a time of crisis. People need to understand that there is not one rule for them and another one for others who are better connected, as it were. We are all in the same boat, really. </span></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Which takes me to my last point. This all strikes me as obvious. So I went (16 March 2020) to the<a href="https://kingstonhsc.ca/covid-19-novel-corona-virus"> COVID19 bits of the website of our local Kingston Health Science Centre</a> (the new name for KGH/Hotel Dieu), to find out what their policies look like, and, to my surprise, there is no relevant information. There's invariably important information about restrictions, like how many visitors will be admitted, and it's all eminently sensible. However, the hospital communicates nothing about what will substantively drive its triage nurses' and clinicians' decision-making should the predicted wave of COVID19 hit the hospital, and you're unfortunate enough to end up there, as a patient. That is unacceptable. Patients and their loved ones have a right to know how life-and-death triage decisions will be made at the hospital where they or their loved ones will be admitted. Incidentally, if everyone knows the basis on which decisions will be made, patient expectations would be realistic from the outset, which can only help in such circumstances. </span></span><br />
<br />udo schuklenkhttp://www.blogger.com/profile/16463788271983027260noreply@blogger.comtag:blogger.com,1999:blog-21709705.post-58979942214643404972019-10-31T12:17:00.001-04:002019-11-01T10:07:13.797-04:00Nature Author's Oddball Piece on Bioethics<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdSzUXgzqVWwdgwEdD3ur54tqvqTjMa6_eGinpKHUfBnXA3dUfYbkoPDNh2z4g1sz6aORyVJeRoQjVFi0J7wlOEoLqbBfxOkqjsgWkAvzANwbIw9Pd_fj5DnYoKj3XlTuGoSvK/s1600/Bioethics.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="433" data-original-width="626" height="221" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdSzUXgzqVWwdgwEdD3ur54tqvqTjMa6_eGinpKHUfBnXA3dUfYbkoPDNh2z4g1sz6aORyVJeRoQjVFi0J7wlOEoLqbBfxOkqjsgWkAvzANwbIw9Pd_fj5DnYoKj3XlTuGoSvK/s320/Bioethics.jpg" width="320" /></a></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;">The journal Nature has published a lengthy <a href="https://www.nature.com/articles/d41586-019-03270-4">Commentary</a> piece by a UK based sociologist on Bioethics (the field, not the journal). It's part of a series of papers marking the journal's 150th anniversary. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Sarah Franklin, the Commentary's author, apparently undertakes in her actual job research on reproductive sociology, as opposed to bioethics.Her Commentary describes aptly the rise of Bioethics as a consequence of funding generously offered to ELSI academics during the heydays of the Human Genome Project. Her take on bioethics is that we should do away with ethics in the context of biomedicine and replace it with freewheeling societal engagement, no doubt facilitated and led by sociologists like herself. She generally thinks that Bioethics began to wither once the HGP funding fell by the wayside. Franklin also thinks that </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">'<i>The stereotype of bureaucratic, box-ticking ethical compliance is no longer fit for purpose in a world of CRISPR twins, synthetic neurons and self-driving cars. Bioethics evolves, as does any other branch of knowledge. The post-millennial trend has been to become more global, less canonical and more reflexive. The field no longer relies on philosophically derived mandates codified into textbook formulas. Instead, it functions as a dashboard of pragmatic instruments, and is less expert-driven, more interdisciplinary, less multipurpose and more bespoke. In the wake of the ‘turn to dialogue’ in science, bioethics often looks more like public engagement — and vice versa</i>.'</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">This truly amounts to a lovely mix of half-truths and nonsense. What she describes as box-ticking ethical compliance still has its place, of course, in the context of, for instance research clinical trials involving human participants (just check the binding national regulatory framework in your country for that). These documents were written by multidisciplinary teams of ethicists, lawyers, clinicians and patient representatives. <i>Quelle surprise</i>. Bioethicists offered here ethical analysis, input, background papers etc, but they never were the ones who single-handedly could have taken credit for such documents. In that sense, the field never relied on philosophically derived mandates codified into textbook format. I wonder whether Franklin ever had a look into bioethics textbooks. I rather doubt it. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Franklin is mistaken when she claims that the field is less expert driven. Of course it is expert and expertise driven, even when it comes to AI in medicine (as I write this, significant funding for research precisely in the area of ethics and AI in medicine is made available in pretty much every Western country that I can think of!). It has always been a multidisciplinary field, but a field of multidisciplinary expertise nonetheless. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">An entirely different question, that she conflates with bioethical analysis, is how biopolicy ought to be developed in a democratic society. Bioethicists have never claimed that they ought to have the last word on it. That's not how democracy works. Invariably, on controversial subjects, there would be public consultations by policy makers, and in addition to expert analysis by bioethicists, and others, public opinions would be sought and engaged before eventually a parliament would take a vote on a controversial issue. Incidentally, that is even true with regard to court judgments. The Canadian Supreme Court in its decision on assisted dying took into account both ethical and legal arguments as well as empirical information on Canadians' views on the subject. Again, <i>quelle surprise</i>. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">What is mostly off-base about Franklin's take on bioethics is that she sees apparently no room for ethical analysis and expertise on matters biopolicy when we could have the freewheeling societal dialogue instead that she prefers. Clearly there is no contradiction in having both. The former should hopefully fruitfully inform the latter. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Unsurprisingly, conservative commentators like the US based creationist 'think tank' <i><a href="https://www.discovery.org/id/">Discovery Institute</a>'s </i>Wesley Smith claimed that <i>Nature</i> declared <i>'</i><a href="https://www.nationalreview.com/corner/nature-science-magazine-article-argues-bioethics-obsolete/">Bioethics is Obsolete</a><i>'. </i>Of course,<i> Nature</i> didn't declare that. A sociologist with no apparent expertise in bioethical analysis declared that in a commentary in the journal. Franklin, of course, has a minor conflict of interest here, depending - as she does - on research funding opportunities also accessed by bioethicists. Wouldn't it be convenient if bioethicists would just step aside for '<span style="background-color: white; color: #041e2e; display: inline; float: none; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">one of the world's leading experts on the social aspects of reproductive and genetic technologies, IVF, cloning, embryo research, and stem cells', as she describes herself on her departmental website? Probably, but that's not how that works in the real world. </span></span></span></div>
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<span style="background-color: white; color: #041e2e; display: inline; float: none; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="font-family: "arial" , "helvetica" , sans-serif;">I do think that the kind of research Franklin undertakes is valuable. What's odd is that she seems to believe that it is the only thing that there ought to be, certainly bioethics should get out of her way. Editing two mainstream journals in our field, I have little to go by other than article downloads. Readership for bioethics peer reviewed expert content has never been greater. Submissions of papers to the journals have never been higher. None of these are signs of a field in decay. </span></span></div>
<div style="-webkit-text-stroke-width: 0px; color: #222222; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; margin: 0px 0px 28px; orphans: 2; padding: 0px; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">
<span style="background-color: white; color: #041e2e; display: inline; float: none; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Incidentally, a good way to compare the academic relevance and impact of a leading bioethicist vs Franklin is probably citations. So, I checked on google scholar how Sarah Franklin (Cambridge) fares compares to <a href="http://www.ox.ac.uk/news-and-events/find-an-expert/professor-julian-savulescu">Julian Savulescu</a> (Oxford). </span></span></div>
<div style="-webkit-text-stroke-width: 0px; color: #222222; font-style: normal; font-variant: normal; letter-spacing: normal; margin: 0px 0px 28px; orphans: 2; padding: 0px; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">
<span style="background-color: white; color: #041e2e; display: inline; float: none; font-style: normal; font-variant: normal; letter-spacing: normal; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><b><a href="https://scholar.google.ca/citations?user=lUAMWXsAAAAJ&hl=en&oi=sra">Franklin citations</a></b></span></span></div>
<div style="-webkit-text-stroke-width: 0px; color: #222222; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; margin: 0px 0px 28px; orphans: 2; padding: 0px; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">
<span style="background-color: white; color: #041e2e; display: inline; float: none; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="font-family: "arial" , "helvetica" , sans-serif;">2017 - 593 ;</span><span style="background-color: transparent; color: #004000;"> </span></span><span style="background-color: white; color: #041e2e; display: inline; float: none; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="font-family: "arial" , "helvetica" , sans-serif;">2018 - 668 </span><span style="background-color: transparent; color: #004000;">; </span></span><span style="background-color: white; color: #041e2e; display: inline; float: none; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="font-family: "arial" , "helvetica" , sans-serif;">2019 - 503</span></span></div>
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<b><span style="font-family: "arial" , "helvetica" , sans-serif;"><a href="https://scholar.google.ca/citations?user=PxdgzQUAAAAJ&hl=en&oi=ao">Savulescu citations</a></span></b></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">2017 - 1695 ; </span><span style="font-family: "arial" , "helvetica" , sans-serif;">2018 - 2000 ; </span><span style="font-family: "arial" , "helvetica" , sans-serif;">2019 - 1750</span></div>
<div style="-webkit-text-stroke-width: 0px; color: #222222; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; margin: 0px 0px 28px; orphans: 2; padding: 0px; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">Why am I thinking that there might just be a little life left in Bioethics?</span><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">The funniest thing about Franklin's attack on Bioethics, and Smith's full-throated support of her agenda, is that we see again feminism and conservative anti-choice activism finding common cause. It's not for the first time, it won't be the last time. Let's hope Franklin enjoys her new-found companions. </span></div>
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udo schuklenkhttp://www.blogger.com/profile/16463788271983027260noreply@blogger.comtag:blogger.com,1999:blog-21709705.post-18013167333541469062019-10-04T18:20:00.004-04:002019-10-04T18:58:36.203-04:00Undertaking ethical psychiatric research in the global south’s prayer camps – is that even possible?<!--[if gte mso 9]><xml>
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<br />
<div class="MsoNormal" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;">
Psychiatrists associated with elite institutions in the
global north teamed up with counterparts in Ghana with a view to determining
what impact the use of gold standard of care drugs plus ‘faith healing’
protocols would have vs ‘faith healing’ only. The venue of their research was
an evangelical prayer camp where the ‘faith healing’ protocol consisted in
keeping many psychiatric patients in chains, making them pray and making them
fast. <a href="https://www.blogger.com/blogger.g?blogID=21709705#_edn1" name="_ednref1" style="mso-endnote-id: edn1;" title=""><span class="MsoEndnoteReference"><span style="mso-special-character: footnote;"><span class="MsoEndnoteReference"><span style="font-family: "calibri" , sans-serif; font-size: 11.0pt; line-height: 107%;">[i]</span></span></span></span></a><br />
<br />
<span class="MsoEndnoteReference"><span style="mso-special-character: footnote;"><span class="MsoEndnoteReference"><span style="font-family: "calibri" , sans-serif; font-size: 11.0pt; line-height: 107%;">[This man lived in a Prayer Camp – he is drinking from a dirty container
which staff put water in for him to drink. He slept, ate, and defecated
beside the tree where he was chained ((c) 2012 Nick Loomis/Human Rights Watch] </span></span></span></span></div>
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<a href="https://proxy.duckduckgo.com/iu/?u=https%3A%2F%2Fsbfphc.files.wordpress.com%2F2013%2F08%2Fghanaprayercamp1.jpg&f=1&nofb=1" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img alt="Comprehensive Mental Health Bill Passed in Ghana has yet ..." border="0" class="detail__media__img-highres js-detail-img js-detail-img-high" height="302" src="https://proxy.duckduckgo.com/iu/?u=https%3A%2F%2Fsbfphc.files.wordpress.com%2F2013%2F08%2Fghanaprayercamp1.jpg&f=1&nofb=1" style="display: block;" width="320" /></a><span class="MsoEndnoteReference"><span style="mso-special-character: footnote;"><span class="MsoEndnoteReference"><span style="font-family: "calibri" , sans-serif; font-size: 11.0pt; line-height: 107%;"> </span></span></span></span>
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The randomised trial discovered that those patients who were
subjected to mainstream drugs did better than those who received only ‘faith
healing’. The results, ultimately, were not overwhelmingly positive for patients
in either group, which may have had to do with the short duration of the trial
and/or the lack of efficacy of some of the mainstream drugs used. There were
some improvements in the group provided with drugs, but apparently that had no
impact on the amount of time they spent chained to the floor in said ‘faith
healing’ facility. </div>
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<br /></div>
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Let me say at the outset that I do think the researchers
went into this research project with the best of intentions, likely hoping they
would be able to show that more patients would improve faster if they received
mainstream psychiatric drugs when compared to ‘faith healing’ only. In turn
that should have led to the unchaining of more such patients than if they were
subjected to ‘faith healing’ only. It should have also impacted positively on
what is offered to patients like them, going forward. They were clearly aware
of the problems to do with undertaking a clinical research project ethically
under the circumstances, ie psychiatric patients chained to the floor in a
‘faith healing’ facility. The objective of this Editorial is not to castigate
them as irresponsible researchers exploiting a small group of chained-up psychiatric
patients in Ghana.</div>
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<br /></div>
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Several ethical issues arose, based on their own reporting
of their trial method and the difficult circumstances under which they
proceeded with their trial. They claimed essentially that the trial
participants were volunteers who had entered the prayer camp voluntarily and
who had given voluntary first-person informed consent to trial participation.<span style="mso-spacerun: yes;"> </span>A neutral observer can’t help but wonder, to
what extent a psychiatric patient chained to the floor is truly able to give
voluntary consent to anything. It turns out, by the researchers own (honest)
reporting, there were some patients who were apparently unable to respond to
their questions. Clearly those patients then were also unable to consent to
trial participation, and yet, some of them were apparently enrolled regardless.
One has reason to doubt that they entered the facility voluntarily. </div>
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<br /></div>
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Given that a significant number of trial participants were
reportedly illiterate, the information was read to them, and their consent (bar
that of those deemed unable to provide first person informed consent) was then taken
to be sufficiently informed. Apparently, nobody validated whether those
patients had a reasonable understanding of the trial method and of their
options vis a vis their participation. Apparently, when family ‘consent’ (aka
authorisation) was sought this occurred often by phone. No paperwork existed
that would have validated that authorisation. No record exists to evaluate the
interactions between the researchers or their intermediaries and the people on
the other end of the phone line, people they took to be family members. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Of course, another issue is the existence of, effectively, a
placebo arm (ie the ‘faith healing’ arm) when a gold standard of clinical care
was provided as part of the trial (ie the active agent in the other arm). These
issues have been litigated elsewhere, so I will not repeat those arguments on
this occasion.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
When I read about this trial I couldn’t help but wonder
whether ethical research is possible under circumstances this academic situated
in the global north considers barbaric. On the one hand, it’s a fact that in
the global south many such prayer camp equivalents exist, and the care provided
to – often impoverished – psychiatric patients is indefensible on professional
grounds, and yet, that is also all there is. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Anybody concerned about the well-being of psychiatric
patients finding themselves in such facilities, voluntarily or by coercion,
should be supportive of research aimed at improving their lot. And yet, there
are obvious questions about the how-to in terms of how this research team went
about recruiting trial participants. I have flagged some of those questions.
The broader question is though, whether ethical research is possible in such
contexts at all. </div>
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<br /></div>
<div class="MsoNormal">
UDO SCHUKLENK</div>
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<br /></div>
<div style="mso-element: endnote-list;">
[This is a draft version of an Editorial that is going to be published in <a href="https://onlinelibrary.wiley.com/journal/14718847"><i>Developing World Bioethic</i>s</a> 2019; 19(4)]<br />
<hr align="left" size="1" width="33%" />
<div id="edn1" style="mso-element: endnote;">
<div class="MsoEndnoteText">
<a href="https://www.blogger.com/blogger.g?blogID=21709705#_ednref1" name="_edn1" style="mso-endnote-id: edn1;" title=""><span class="MsoEndnoteReference"><span style="mso-special-character: footnote;"><span class="MsoEndnoteReference"><span style="font-family: "calibri" , sans-serif; font-size: 10.0pt; line-height: 107%;">[i]</span></span></span></span></a>
Ofori-Atta, A, Attafuah, J, Jack, H, Baning, F, and R Rosenheck. 2018. Joining
psychiatric care and faith healing in a prayer camp in Ghana: randomised trial.
<i>British Journal of Psychiatry</i> 212: 34-41. </div>
</div>
</div>
udo schuklenkhttp://www.blogger.com/profile/16463788271983027260noreply@blogger.comtag:blogger.com,1999:blog-21709705.post-70866803417204069372019-08-14T09:59:00.001-04:002019-08-14T09:59:06.843-04:00How we operate the review process at Developing World Bioethics<img alt="Developing World Bioethics branding banner" class="journal-banner-image" id="journal-banner-image" src="https://wol-prod-cdn.literatumonline.com/pb-assets/journal-banners/14718847-1501384716100.jpg" style="display: block; margin-bottom: 15px;" />I had the great fortune of attending the World Congress of Bioethics
in December 2018 in Bengaluru, India. Besides my participation in two
panels, I also hosted – jointly with Brian Collins, our Editor at
Wiley‐Blackwell, the publisher of <a href="https://onlinelibrary.wiley.com/journal/14718847#pane-01cbe741-499a-4611-874e-1061f1f4679e01">Developing World Bioethics</a> – a workshop on academic
publishing. It was meant to give prospective authors an opportunity to
‘meet the Editor’ so to speak, to acquire insight in the academic
publishing enterprise, and last but not least, to ask us pretty much any
questions that they might have, in so far as they relate to the
publication processes of the journal.<br />
There seemed to be a number of misconceptions about how peer
review operates generally, and vis a vis this journal in particular.
For instance, concerns were raised that ‘big name’ authors, or at least
senior academics, might receive preferential treatment, and the question
was asked whether such academics’ names should be added as authors to
submitted manuscripts in order to improve the manuscript's acceptance
chances.<br />
<br />
Let me say, at the most basic, this journal is bound by the
International Council of Medical Journal Editors guidelines on
authorship.<a aria-controls="dewb12229-note-1001_2" aria-expanded="true" aria-haspopup="false" aria-label="Note" class="noteLink scrollableLink" href="https://onlinelibrary-wiley-com.proxy.queensu.ca/doi/full/10.1111/dewb.12229#dewb12229-note-1001_2" id="dewb12229-note-1001_2-controller" title="Link to note">1</a> I would strongly encourage you to look those up and ensure that you and your co‐authors <i>all</i>
meet those criteria. In multi‐author submissions each of you would have
to confirm that each of you individually meets those criteria. If you
decide to add a name of someone as an author who does not meet those
standards, then you and they would have to proactively lie to us during
your submission process, because you would be asked what each of you
contributed to the paper, and how each of you met the criteria set out
in the mentioned guidelines on authorship. I would strongly discourage
you from any deception in this context.<br />
<br />
The journal's Managing Editor, Andy F. Visser, will then
pass the received manuscript on to both of us, myself, and Debora Diniz,
the Co‐Editors of the journal, asking us for a determination on whether
the paper should be send out for external peer review or whether we
should reject it outright. The policy at this journal is that both the
Managing Editor as well as the journal's Co‐Editors are always aware of
the author(s) identities.<br />
<br />
The Co‐Editors of the journal make then a decision on
whether or not a submitted paper is prima facie worthy of peer review.
That means that we will ascertain whether the submitted paper is within
the remit of the journal, whether the analysis seems coherent, and
whether references follow academic standards. If we think the submitted
paper does not meet those standards it will be rejected by us without
further peer review.<br />
<br />
Once we have decided that a manuscript is worthy of external
review, each of us as Co‐Editors chooses their own preferred peer
reviewer. We do this without consulting each other, mostly in order to
avoid any undue influence on or from each other. Reviewers are typically
chosen with a view to receiving quality feed‐back with regard to the
specialist subject area of the paper in question. As Co‐Editors we might
have specialist expertise in a number of areas within bioethics, but
certainly we don't have that kind of expertise with regard to most
papers submitted to this journal. That's one of the reasons for external
review.<br />
<br />
We communicate our choices back to the Managing Editor who
then invites our chosen reviewers to review the manuscript in question.
At that point in time the manuscript is anonymised, the reviewers have
access to the article but all author identifying information is removed.<br />
<br />
There are other models of peer review, so why have we chosen
this model? We try to avoid influencing reviewers’ decisions by
removing author identifying information. We know today that anything
from an author's name (because it's linked to fame, notoriety, sex,
ethnicity, religion, etc) to their academic affiliation can bias
reviewers. We prefer our reviewers are not subjected to such
information, irrelevant as it is when it comes to reviewing the quality
of a particular submission. A graduate student's submission will be
treated no different than a submission by the most influential
bioethicist alive today. There are other reasons to do with the size of
our comparably small field. For instance, a junior academic might be
negatively affected if their weak submission was rejected by a reviewer
who also happens to be on an appointments committee that decides on
whether or not the author of the rejected paper should be shortlisted
for a job interview.<br />
<br />
Equally, when we receive the reviews and pass them on to the
author(s) with our editorial decision, the reviewers’ names are
stripped off the reviews. In order to facilitate frank reviews it is
counterproductive for reviewers to know, for instance, that during the
next conference that they will be attending there will be authors who
are supremely frustrated that their reviews led to a rejection.<br />
The system of peer review we operate ensures that reviewer
biases are reduced as much as is feasible, and it protects reviewers’
ability to provide us as Co‐Editors with frank reviews. We do think that
it also protects authors, especially authors whose content has been
rejected, from having to face their reviewers in person during the next
academic conference that they are attending. Then there is the risk that
a rejected author tries to get even with a reviewer if – by chance –
they happen to get invited to review the submission of a now‐author
turned reviewer.<br />
<br />
To cut a long story short, we maintain a process of peer
review where neither the reviewers nor the authors know each others’
identities. The main motive for this policy is to remove biases from the
review process.<br />
<br />
Wiley Blackwell has produced a fair number of useful tools<a aria-controls="dewb12229-note-1002_3" aria-expanded="true" aria-haspopup="false" aria-label="Note" class="noteLink scrollableLink" href="https://onlinelibrary-wiley-com.proxy.queensu.ca/doi/full/10.1111/dewb.12229#dewb12229-note-1002_3" id="dewb12229-note-1002_3-controller" title="Link to note">2</a> that you can access if you wish to find out more about academic publishing generally, and peer review in particular.<a aria-controls="dewb12229-note-1003_4" aria-expanded="true" aria-haspopup="false" aria-label="Note" class="noteLink scrollableLink" href="https://onlinelibrary-wiley-com.proxy.queensu.ca/doi/full/10.1111/dewb.12229#dewb12229-note-1003_4" id="dewb12229-note-1003_4-controller" title="Link to note">3</a><br />
<br />
Also worth noting, this journal follows the procedures and
policies laid out in a series of flowcharts produced by the Committee on
Publication Ethics.<a aria-controls="dewb12229-note-1004_5" aria-expanded="true" aria-haspopup="false" aria-label="Note" class="noteLink scrollableLink" href="https://onlinelibrary-wiley-com.proxy.queensu.ca/doi/full/10.1111/dewb.12229#dewb12229-note-1004_5" id="dewb12229-note-1004_5-controller" title="Link to note">4</a><br />
<br />
Do keep in mind, Editors are human beings, much like you.
Mistakes can happen. Nothing should stop you from communicating your
concerns to us. We will always aim to deal promptly and transparently
with your concerns.<br />
<br />
<span class="current-selection" style="font-family: sans-serif; font-size: 24px; left: 195.698px; padding: 0px; top: 2845.99px; transform: scaleX(1.07298);">1) http://www.icmje.org/recommendations/browse/roles‐and‐responsibilities/</span><span style="font-family: sans-serif; font-size: 24px; left: 185.954px; padding: 0px; top: 2881.99px; transform: scaleX(1.07492);"><span class="current-selection">defining‐the‐role‐of‐authors‐and‐contributors.html</span></span><br />
<span style="font-family: sans-serif; font-size: 24px; left: 185.954px; padding: 0px; top: 2881.99px; transform: scaleX(1.07492);"><span class="current-selection">2)</span></span><span style="font-family: sans-serif; font-size: 24px; left: 185.954px; padding: 0px; top: 2881.99px; transform: scaleX(1.07492);"><span class="current-selection"><span class="current-selection" style="font-family: sans-serif; font-size: 16.8px; left: 179.325px; padding: 0px; top: 2812.15px;"></span><span class="current-selection" style="font-family: sans-serif; font-size: 24px; left: 189.069px; padding: 0px; top: 2815.84px; transform: scaleX(1.05981);"> https://authorservices.wiley.com/author‐resources/index.html</span></span></span><br />
<span style="font-family: sans-serif; font-size: 24px; left: 185.954px; padding: 0px; top: 2881.99px; transform: scaleX(1.07492);"><span class="current-selection"><span class="current-selection" style="font-family: sans-serif; font-size: 24px; left: 189.069px; padding: 0px; top: 2815.84px; transform: scaleX(1.05981);">3) </span></span></span><span style="font-family: sans-serif; font-size: 24px; left: 185.954px; padding: 0px; top: 2881.99px; transform: scaleX(1.07492);"><span class="current-selection"><span class="current-selection" style="font-family: sans-serif; font-size: 24px; left: 189.069px; padding: 0px; top: 2815.84px; transform: scaleX(1.05981);"><span class="current-selection" style="font-family: sans-serif; font-size: 24px; left: 189.069px; padding: 0px; top: 2863.16px; transform: scaleX(1.05209);"> https://authorservices.wiley.com/author‐resources/Journal‐Authors/submission‐peer‐</span><span class="current-selection" style="font-family: sans-serif; font-size: 24px; left: 179.325px; padding: 0px; top: 2899.16px; transform: scaleX(1.07204);">review/peer‐review.html</span> </span> </span></span><br />
<span style="font-family: sans-serif; font-size: 24px; left: 185.954px; padding: 0px; top: 2881.99px; transform: scaleX(1.07492);"><span class="current-selection">4) </span></span><span style="font-family: sans-serif; font-size: 24px; left: 1232.98px; padding: 0px; top: 2899.16px; transform: scaleX(1.06663);"><span class=""> <span class="current-selection">https://publicationethics.org</span></span><span class="current-selection">/guidance/Flowcharts</span></span> udo schuklenkhttp://www.blogger.com/profile/16463788271983027260noreply@blogger.comtag:blogger.com,1999:blog-21709705.post-18602443954765910822019-08-14T09:47:00.002-04:002019-08-14T15:33:40.274-04:002019 Google Scholar Metrics for Bioethics Journals<div class="MsoNormal">
<span style="background-color: white; color: #333333; font-family: "arial" , "tahoma" , "helvetica" , "freesans" , sans-serif; font-size: 14.8500003814697px; line-height: 16.6319999694824px;">Quite possibly the below table will be displayed in odd ways on your screen. </span><br />
<br style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.8500003814697px; line-height: 16.6319999694824px;" />
<span style="background-color: white; color: #333333; font-family: "arial" , "tahoma" , "helvetica" , "freesans" , sans-serif; font-size: 14.8500003814697px; line-height: 16.6319999694824px;">Usual
CoI blurb applies. I co-edit two of the journals in this list. List
up-dated August 2019. Any mistakes are my own, please alert me if you
discover discrepancies between what I am reporting and what you're able
to find on google scholar. </span></div>
<div class="MsoNormal">
<br />
<div class="MsoNormal" style="-webkit-text-stroke-width: 0px; background-color: #fff9ee; color: #222222; font-family: Georgia, Utopia, "Palatino Linotype", Palatino, serif; font-size: 15.4px; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: normal; letter-spacing: normal; orphans: 2; text-align: start; text-decoration-color: initial; text-decoration-style: initial; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px;">
<div class="MsoNormal" style="background-color: white; color: #333333; font-family: calibri, sans-serif; margin: 0cm 0cm 8pt;">
<span style="background: silver; color: #222222; font-size: 10pt;"><span style="background-color: white; color: #333333; font-family: "arial" , "tahoma" , "helvetica" , "freesans" , sans-serif; font-size: 14.85px; line-height: 16.632px;"><span style="font-size: x-small;"><br class="Apple-interchange-newline" /></span></span></span> <b>h5 h5-median</b></div>
</div>
</div>
<div class="MsoNormal">
<br /></div>
<ol>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">Nursing Ethics 37 51 </span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-size: small;">Science and Engineering Ethics</span></span><span style="background-color: transparent; color: black; display: inline; float: none; font-family: "times new roman"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-size: small;"> </span></span> </span><span style="background-color: transparent; color: black; font-family: "arial" , "helvetica" , sans-serif; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"> 36 52</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">Journal of Medical Ethics 34 44 </span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;">The American Journal of Bioethics 31</span><span style="font-family: "arial" , "helvetica" , sans-serif;"> 39</span></span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;">bmc medical ethics 30 43</span> </span></span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Bioethics 25 35</span> </span></span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Hastings Center Report 24 35 </span> </span> </span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: small;">Journal of Law, Medicine and Ethics 23 37</span><span style="font-size: small;"> </span> </span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">Medicine, Health Care and Philosophy 23 35</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">Neuroethics 19 27</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Journal of Empirical Research on Human Research Ethics </span><a href="https://scholar.google.co.uk/citations?hl=en&vq=med_bioethics&view_op=list_hcore&venue=vhkAs2K91KgJ.2015"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; text-decoration: none;">1</span></a><span style="font-family: "arial" , "helvetica" , sans-serif;">9 26</span> </span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">American Journal of Bioethics Neuroscience 18 27</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; font-size: small;">Journal of Bioethical Inquiry </span><a href="https://scholar.google.co.uk/citations?hl=en&vq=med_bioethics&view_op=list_hcore&venue=2PTaW0VPz2IJ.2015"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; font-size: small; text-decoration: none;">18</span></a><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; font-size: small;"> 25</span></span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; font-size: small;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Nursing Philosophy 18 22</span> </span></span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; font-size: small;"><span style="background: white; color: #222222; font-size: 10.0pt;"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; font-size: small;">Cambridge Quarterly of Healthcare Ethics </span><a href="https://scholar.google.co.uk/citations?hl=en&vq=med_bioethics&view_op=list_hcore&venue=5NBxhBJ1zY4J.2015"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; font-size: small; text-decoration: none;">17</span></a><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; font-size: small;"> 22</span></span> </span> </span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">Journal of Medicine and Philosophy </span><a href="https://scholar.google.co.uk/citations?hl=en&vq=med_bioethics&view_op=list_hcore&venue=pqVFYKdK69YJ.2015"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; text-decoration: none;">16</span></a><span style="font-family: "arial" , "helvetica" , sans-serif;"> 22 </span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="background: white; color: #222222; font-size: 10.0pt;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: small;"><span style="background-color: white; font-family: "arial" , "helvetica" , sans-serif;">Kennedy Institute of Ethics Journal 16 22</span></span></span> </span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">Health Care Analysis 15 22</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="background: white; color: #222222; font-size: 10.0pt;"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; font-size: small;"><span style="background: white; color: #222222; font-size: 10.0pt;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: small;">Public Health Ethics </span><a href="https://scholar.google.co.uk/citations?hl=en&vq=med_bioethics&view_op=list_hcore&venue=XaniIuAs-CQJ.2015"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; font-size: small; text-decoration: none;">15</span></a><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: small;"> 19</span></span></span></span></span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="background: white; color: #222222; font-size: 10.0pt;"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; font-size: small;"><span style="background: white; color: #222222; font-size: 10.0pt;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: small;"><span style="background: white; color: #222222; font-size: 10.0pt;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: small;"><span style="font-family: "arial" , "helvetica" , sans-serif;">NanoEthics </span><a href="https://scholar.google.co.uk/citations?hl=en&vq=med_bioethics&view_op=list_hcore&venue=i8Dv-pVu4hMJ.2015"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; text-decoration: none;">14</span></a><span style="font-family: "arial" , "helvetica" , sans-serif;"> 20</span></span></span> </span></span></span></span></span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="background: white; color: #222222; font-size: 10.0pt;"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; font-size: small;"><span style="background: white; color: #222222; font-size: 10.0pt;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: small;"><span style="background: white; color: #222222; font-size: 10.0pt;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: small;">Theoretical Medicine and Bioethics </span><a href="https://scholar.google.co.uk/citations?hl=en&vq=med_bioethics&view_op=list_hcore&venue=Xh9WbfbuS9kJ.2015"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; font-size: small; text-decoration: none;">14</span></a><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: small;"> 18</span></span> </span></span></span></span> </span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="background: white; color: #222222; font-size: 10.0pt;"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; font-size: small;">Developing World Bioethics </span><a href="https://scholar.google.co.uk/citations?hl=en&vq=med_bioethics&view_op=list_hcore&venue=ksUoo95MlnMJ.2015"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; font-size: small; text-decoration: none;">13</span></a><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; font-size: small;"> 17</span></span></span></span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="background: white; color: #222222; font-size: 10.0pt;"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; font-size: small;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Journal of Medical Ethics and History of Medicine 12 25</span> </span></span></span></span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="background: white; color: #222222; font-size: 10.0pt;"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; font-size: small;"><span style="background-color: white;"><span style="font-family: "arial" , "helvetica" , sans-serif;">HEC Forum </span><a href="https://scholar.google.co.uk/citations?hl=en&vq=med_bioethics&view_op=list_hcore&venue=jabbVGy0Lm8J.2015"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; text-decoration: none;">12</span></a><span style="font-family: "arial" , "helvetica" , sans-serif;"> 20</span></span> </span></span></span></span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="background: white; color: #222222; font-size: 10.0pt;"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; font-size: small;">American Journal of Bioethics Empirical Bioethics 12 14 </span></span></span> </span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">Indian Journal of Medical Ethics </span><a href="https://scholar.google.co.uk/citations?hl=en&vq=med_bioethics&view_op=list_hcore&venue=OCAxMz-h3iUJ.2015"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; text-decoration: none;">11</span></a><span style="font-family: "arial" , "helvetica" , sans-serif;"> 17</span><span style="background: white; color: #222222; font-size: 10.0pt;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: small;"><span style="background-color: white; font-family: "arial" , "helvetica" , sans-serif;"> </span></span></span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">The Journal of Clinical Ethics </span><a href="https://scholar.google.co.uk/citations?hl=en&vq=med_bioethics&view_op=list_hcore&venue=fiJO18YSuVcJ.2015"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; text-decoration: none;">11</span></a><span style="font-family: "arial" , "helvetica" , sans-serif;"> 15</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="background-color: white;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Ethik in der Medizin 9 14</span></span></span> </span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">Perspectives in Biology and Medicine</span> <span style="font-family: "arial" , "helvetica" , sans-serif;">9 14</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">Narrative Inquiry in Bioethics</span> <span style="font-family: "arial" , "helvetica" , sans-serif;">8 12</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">International Journal of Feminist Approaches to Bioethics </span><a href="https://scholar.google.co.uk/citations?hl=en&vq=med_bioethics&view_op=list_hcore&venue=-pBPGkt41DAJ.2015"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; text-decoration: none;">8</span></a><span style="font-family: "arial" , "helvetica" , sans-serif;"> 11</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;">The New Bioethics 8 11</span></span></span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Ethics, Medicine and Public Health 7 10</span></span> </span></span> </span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">South African Journal of Bioethics and Law</span> <span style="font-family: "arial" , "helvetica" , sans-serif;"> 7 7</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Christian Bioethics 5 7</span></span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Ethics and Medicine 5 6</span> </span></span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Asian Bioethics Review </span> 4 7 </span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">JAHR - European Journal of Bioethics 4 5</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Journal international de bioethique</span> <span style="font-family: "arial" , "helvetica" , sans-serif;">4 5</span> </span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;">National Catholic Bioethics Quarterly 4 5</span> </span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">Chinese Medical Ethics 2 2</span></li>
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*<span style="color: #222222; font-family: "arial" , sans-serif; font-size: 10pt;">h5-index
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<br />udo schuklenkhttp://www.blogger.com/profile/16463788271983027260noreply@blogger.comtag:blogger.com,1999:blog-21709705.post-35794662906162670842019-01-24T11:26:00.000-05:002019-01-24T11:46:54.886-05:00Certainty is not a defensible standard for policy making in the context of assisted dying <!--[if gte mso 9]><xml>
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<a href="https://cdn.boldomatic.com/content/post/zQ2uXw/Uncertainty-is-the-only-certainty?size=800" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img alt="Image result for certainty" border="0" class="irc_mi" height="320" src="https://cdn.boldomatic.com/content/post/zQ2uXw/Uncertainty-is-the-only-certainty?size=800" style="margin-top: 0px;" width="320" /></a>I mentioned in a Bioethics editorial a while ago
that new frontiers are opening in the assisted dying debate. As an increasing
number of jurisdictions decriminalize assisted dying in some shape or form,
ethical arguments against all models of assisted dying are seen increasingly as
settled in favour of this practice. I suggested in said editorial that the
focus of the academic debate has shifted toward a new set of questions: the
scope of assisted dying (i.e., who should be eligible), the status of advance directives, and the issue of conscientious refuser accommodation.<a href="https://draft.blogger.com/blogger.g?blogID=21709705#_ftn1" name="_ftnref1" style="mso-footnote-id: ftn1;" title=""><sup><span style="mso-special-character: footnote;"><sup><span style="color: #181717; font-family: "calibri" , sans-serif; font-size: 8.0pt; line-height: 133%;">[1]</span></sup></span></sup></a>
It seems my prediction wasn't far off the mark. The Canadian Academies have
produced a voluminous expert panel report focusing extensively on scope (mature
minors, mental illness) as well as the issue of advance directives. I highly
recommend it to your attention.<a href="https://draft.blogger.com/blogger.g?blogID=21709705#_ftn2" name="_ftnref2" style="mso-footnote-id: ftn2;" title=""><sup><span style="mso-special-character: footnote;"><sup><span style="color: #181717; font-family: "calibri" , sans-serif; font-size: 8.0pt; line-height: 133%;">[2]</span></sup></span></sup></a></div>
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<br /></div>
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Unfortunately, as is so often the case with these sorts of
panels, it is unclear how its members were appointed: Why was a particular
member appointed and not someone else? What criteria were used to determine who
would and who would not be chosen? And, indeed, did the funder of the report,
the Government of Canada, have a veto right on particular potential expert
members? All of this matters if the sponsor of the report, in this case the Canadian
Academies, wants to meet basic standards of public reasonableness and
accountability. After all, the Government of Canada is currently defending its
restrictive assisted dying legislation in the Supreme Court of Canada. The
expert panel was tasked with summarizing the state of knowledge, but not with
providing policy guidance to the government. It is not inconceivable that the
government hopes to use evidence from these ostensibly authoritative reports in
the Court. For that reason alone, transparency about the procedures guiding the
appointment of experts drafting reports financed by that same government is
important.</div>
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The chairperson of the group drafting the report on mental
illness and assisted dying, Kwame McKenzie, made a statement to Canadian news
media in support of current government policy that excludes competent people
who suffer from refractory mental illness from access to assisted dying. He
reportedly cautioned that ‘no one can be completely certain that a mentally ill
patient is never going to get better’.<a href="https://draft.blogger.com/blogger.g?blogID=21709705#_ftn3" name="_ftnref3" style="mso-footnote-id: ftn3;" title=""><sup><span style="mso-special-character: footnote;"><sup><span style="color: #181717; font-family: "calibri" , sans-serif; font-size: 8.0pt; line-height: 133%;">[3]</span></sup></span></sup></a>
Which takes me to the actual topic of this blogpost: certainty as a standard
for health policy making. Complete certainty, <i style="mso-bidi-font-style: normal;">if</i> that were ever possible in the context of health and disease,
where most decision making is based on probability as opposed to certainty,
might be a defensible threshold if nobody were harmed by the implementation of
such a high standard. If the setting of a high standard were cost neutral,
there would be no good reason not to have such a standard.</div>
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Of course, in the real world, such an elevated standard
comes at a cost. A high price is paid by those patients who have decisional
capacity and live with refractory mental illness that renders their lives not
worth living to them, who would avail themselves of assisted dying if it were
available to them.<a href="https://draft.blogger.com/blogger.g?blogID=21709705#_ftn4" name="_ftnref4" style="mso-footnote-id: ftn4;" title=""><sup><span style="mso-special-character: footnote;"><sup><span style="color: #181717; font-family: "calibri" , sans-serif; font-size: 8.0pt; line-height: 133%;">[4]</span></sup></span></sup></a>
Regulatory attempts influenced by Dr McKenzie's demand for certainty would
result in a restrictive eligibility policy harming precisely those patients who
will, in reality, never get better. It is uncontroversially true that that is
the case for many patients, particularly those suffering from refractory
depression. Dr McKenzie's take is identical to the policy favoured by the
government sponsor of this report. High suicide rates among this particular group
of patients suggest that many of these patients vote with their feet while well
intentioned experts and policy makers implement policies that are detrimental
to what is arguably in their best interest.<a href="https://draft.blogger.com/blogger.g?blogID=21709705#_ftn5" name="_ftnref5" style="mso-footnote-id: ftn5;" title=""><sup><span style="mso-special-character: footnote;"><sup><span style="color: #181717; font-family: "calibri" , sans-serif; font-size: 8.0pt; line-height: 133%;">[5]</span></sup></span></sup></a></div>
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<br /></div>
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Ultimately, policy makers implement legislation aimed at
overriding competent patients’ choices simply because they disagree with their
choices. The justification for such strong paternalistic action rested so far
on vacuous labels, such as ‘vulnerability’, under the cover of which individual
agency was removed wholesale from a whole class of patients with legal
capacity. This is now apparently complemented by demands for certainty. If
medical practice and health policy depend on certainty as a conditio sine qua
non, going forward, no further regulatory action can be taken on any subject.
In fact, the current assisted dying legislation, as it requires that death of
the assistance‐seeking person is ‘reasonably foreseeable’, would have to be
reconsidered, given that we can never be certain that death would actually be
forthcoming. The decriminalization of the possession and use of cannabis in
Canada, that was recently legislated by the Government of Canada, would have to
be reconsidered, because we cannot be certain what the consequences of that will be for a whole
range of issues. </div>
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<![endif]-->The lesson to be taken from the demand for certainty is this: mentally ill people with legal capacity are treated unjustifiably as special cases by mental health experts and policy makers. They are being stigmatized in the name of protecting them. Strong paternalism is inflicted on them in ways that would not be considered acceptable in a liberal, modern 21st century society if it affected others who<br />
have legal capacity, but are not afflicted by the mental illness label.<span style="color: #181717; font-family: "calibri" , sans-serif; font-size: 8.0pt; line-height: 133%;"></span></div>
<br />
<br />
<div style="mso-element: footnote-list;">
<br clear="all" />
<hr align="left" size="1" width="33%" />
<div id="ftn1" style="mso-element: footnote;">
<div class="footnotedescription" style="line-height: 141%;">
<a href="https://draft.blogger.com/blogger.g?blogID=21709705#_ftnref1" name="_ftn1" style="mso-footnote-id: ftn1;" title=""><span class="footnotemark"><span style="mso-special-character: footnote;"><span class="footnotemark"><span style="font-size: 6.0pt; line-height: 133%; mso-ansi-language: EN-CA; mso-bidi-font-size: 11.0pt; mso-bidi-language: AR-SA; mso-fareast-language: EN-CA;">[1]</span></span></span></span></a> Schuklenk, U. (2017). New
frontiers in end‐of‐life ethics (and policy): Scope, advance directives and
conscientious objection. <i style="mso-bidi-font-style: normal;">Bioethics</i>,<i style="mso-bidi-font-style: normal;"> 31</i>, 422–423. </div>
</div>
<div id="ftn2" style="mso-element: footnote;">
<div class="footnotedescription" style="line-height: 129%; margin-bottom: 2.25pt; margin-left: 0cm; margin-right: 2.05pt; margin-top: 0cm;">
<a href="https://draft.blogger.com/blogger.g?blogID=21709705#_ftnref2" name="_ftn2" style="mso-footnote-id: ftn2;" title=""><span class="footnotemark"><span style="mso-special-character: footnote;"><span class="footnotemark"><span style="font-size: 6.0pt; line-height: 133%; mso-ansi-language: EN-CA; mso-bidi-font-size: 11.0pt; mso-bidi-language: AR-SA; mso-fareast-language: EN-CA;">[2]</span></span></span></span></a> Canadian Academies.
(2018). <i style="mso-bidi-font-style: normal;">Medical assistance in dying:
Expert panel on medical assistance in dying</i>. Ottawa. Available at:<a href="https://www.scienceadvice.ca/reports/medical-assistance-in-dying/"><span style="color: #181717; text-decoration: none;">
https://www.scienceadvice.ca/reports/medical‐assis</span></a><a href="https://www.scienceadvice.ca/reports/medical-assistance-in-dying/"><span style="color: #181717; text-decoration: none;">tance‐in‐dying/</span></a>
[Accessed Jan 6, 2019]. </div>
</div>
<div id="ftn3" style="mso-element: footnote;">
<div class="footnotedescription" style="margin-bottom: .0001pt; margin-bottom: 0cm; margin-left: 0cm; margin-right: 2.05pt; margin-top: 0cm;">
<a href="https://draft.blogger.com/blogger.g?blogID=21709705#_ftnref3" name="_ftn3" style="mso-footnote-id: ftn3;" title=""><span class="footnotemark"><span style="mso-special-character: footnote;"><span class="footnotemark"><span style="font-size: 6.0pt; line-height: 133%; mso-ansi-language: EN-CA; mso-bidi-font-size: 11.0pt; mso-bidi-language: AR-SA; mso-fareast-language: EN-CA;">[3]</span></span></span></span></a> Harris, K. (2019, Jan 3).
The next frontier in the right to die: advance requests, minors and the
mentally ill. <i style="mso-bidi-font-style: normal;">CBC News</i>. Available at:
<a href="https://www.cbc.ca/news/politics/maid-assisted-death-minors-mental-illness-1.4956388"><span style="color: #181717; text-decoration: none;">https://www.cbc.ca/news/politics/maid‐assist</span></a><a href="https://www.cbc.ca/news/politics/maid-assisted-death-minors-mental-illness-1.4956388"><span style="color: #181717; text-decoration: none;">ed‐death‐minors‐mental‐illness‐1.4956388
</span></a>[Accessed Jan 6, 2019]. </div>
</div>
<div id="ftn4" style="mso-element: footnote;">
<div class="footnotedescription" style="margin-bottom: 2.05pt;">
<a href="https://draft.blogger.com/blogger.g?blogID=21709705#_ftnref4" name="_ftn4" style="mso-footnote-id: ftn4;" title=""><span class="footnotemark"><span style="mso-special-character: footnote;"><span class="footnotemark"><span style="font-size: 6.0pt; line-height: 133%; mso-ansi-language: EN-CA; mso-bidi-font-size: 11.0pt; mso-bidi-language: AR-SA; mso-fareast-language: EN-CA;">[4]</span></span></span></span></a> Rooney, W., Schuklenk, U.,
& van de Vathorst, S. (2018). Are concerns about irremediableness,
vulnerability, or competence sufficient to justify excluding all psychiatric
patients from medical aid in dying? <i style="mso-bidi-font-style: normal;">Health
Care Analysis</i>,<i style="mso-bidi-font-style: normal;"> 26</i>, 326–343. </div>
</div>
<div id="ftn5" style="mso-element: footnote;">
<div class="footnotedescription" style="line-height: 141%; margin-bottom: .0001pt; margin-bottom: 0cm;">
<a href="https://draft.blogger.com/blogger.g?blogID=21709705#_ftnref5" name="_ftn5" style="mso-footnote-id: ftn5;" title=""><span class="footnotemark"><span style="mso-special-character: footnote;"><span class="footnotemark"><span style="font-size: 6.0pt; line-height: 133%; mso-ansi-language: EN-CA; mso-bidi-font-size: 11.0pt; mso-bidi-language: AR-SA; mso-fareast-language: EN-CA;">[5]</span></span></span></span></a> Schuklenk, U., & van
de Vathorst, S. (2015). Treatment‐resistant major depressive disorder and
assisted dying. <i style="mso-bidi-font-style: normal;">Journal of Medical Ethics</i>,<i style="mso-bidi-font-style: normal;"> 41</i>, 577–583. </div>
</div>
</div>
udo schuklenkhttp://www.blogger.com/profile/16463788271983027260noreply@blogger.comtag:blogger.com,1999:blog-21709705.post-39586727891970275462018-10-08T19:46:00.000-04:002018-10-11T09:54:05.089-04:00Sokal on steroids: Why hoax papers submitted successfully to academic journals proves nothing (ok, little)A trio of authors has, during a 12 months period, submitted - by their own account - 20 manuscripts to academic journals they broadly identify as being in disciplines or fields of study associated with 'academic grievance studies'. From what I gather they are not too terribly fond of social constructionist colleagues in their own academic disciplines, and presumably other disciplines. Let me say at the outset that I am sympathetic to some of their concerns. They rightly lament that what they broadly label as 'academic grievance studies' has led to thought crimes prosecutions of sorts (just think about the <a href="http://dailynous.com/2017/05/01/philosophers-article-transracialism-sparks-controversy/">Hypatia controversy</a> involving an article by Rebecca Tuvel - mob justice might be one way to describe what happened to Tuvel). Ironically, Hypatia is again among the offending journals, which is interesting in so far as it isn't a journal entirely dedicated to publishing social constructivist content, another bugbear of the initiators of the Sokal-on-steroids hoax.<br />
<br />
In any case, they apparently <a href="https://areomagazine.com/2018/10/02/academic-grievance-studies-and-the-corruption-of-scholarship/">spend their while producing 20 hoax articles</a> that they planned to submit to top journals in different disciplines or areas of study that they find disagreeable. I am genuinely curious whether this research project was submitted to their institution's ethical review committee, because it uncontroversially involved involuntary human research participants (identifiable journal editors, reviewers).<br />
<br />
Here's the result of their efforts: Of these 20 papers 7 were accepted, 6 were rejected outright, and the rest were somewhat in-play, including a number that received a revise and resubmit verdict. The hoax initiators claim that two papers received a verdict of 'revise and resubmit' that they took to mean 'usually results in publication.' For what it's worth, at the journals I co-edit this verdict means renewed external review with the possibility of an outright rejection. So, no, not 'usually results in publication.' I wonder whether this interpretation is self-serving in so far as they needed to, of course, bolster their case as good as they could.<br />
<br />
At the end of the day, they had 20 submissions, 7 acceptances.<br />
<br />
I agree with the team of hoaxters that this constitutes egg on the faces of the editors of those journals, and more so, on their reviewers' faces. It's embarrassing.<br />
<br />
I read a few comments on this project along the lines that in STEM subjects journals also face large numbers of retractions each year, and so it's not surprising that terrible content also passes peer review in humanities' areas. While that is true, it shouldn't distract from the fact that well-established, influential journals were coaxed here into accepting garbage. Of course, that matters!<br />
<br />
My problems really lie elsewhere. One is that a study where n=20 doesn't demonstrate that a particular discipline has methodological problems. It simply means that - when all is said and done - 7 crappy papers were accepted by non-specialist journal editors based on their reviewers' recommendations. Big whoop! Frankly, this shows us that on this occasion reviewers failed. On 7(!) occasions. We do not know whether the same would have transpired if hundreds of such papers had been submitted to the same journals. It's one such paper per journal. Talking anecdotal, this is as anecdotal as it gets. <br />
<br />
Let me be honest here, as an editor of journals that rarely if ever publish social constructionist papers, I could also be accepting papers that succeeded in fooling our peer reviewers. I don't have the subject expertise to be confident in evaluating all the manuscripts that are submitted to my journals. I rely on - these days - mostly reluctant reviewers who hopefully provide me with good (sometimes excellent, detailed) comments and recommendations. I rely on competent reviewers being diligent. I rely on colleagues I ask to review a manuscript to come back to me if they do not consider themselves competent. I rely on unpaid reviewers spending a considerable amount of time doing their job, when they could spend that time writing their own papers, or on a grant application, or a job application, or they could simply spend time with their loved ones. Not all of them, all the time, deliver a reliable review. Big whoop. If a faulty paper gets published (and it hasn't happened to us yet), I'm confident, over time responses to such a paper would eventually show where the paper we published went wrong, and why. <a href="https://onlinelibrary.wiley.com/doi/10.1111/bioe.12214">A case in point is this Editorial I wrote</a>. One of the articles flagged there was making false empirical claims, it has since been retracted. The article in question passed external peer review, but it is clear that the reviewers took the empirical claims made by the authors to be true, referenced as they were. It turns out that that was a mistake. <br />
<br />
All of that happens without hoaxters wasting my time and that of our reviewers.<br />
<br />
The hoaxter trio takes these 7 accepted manuscripts as evidence for the methodological failings of what they refer to as 'social constructivism'or 'radical constructivism'. They apparently 'corrupt' scholarship.<br />
<br />
The thing is, that might well be true, and social constructivism scholarship is truly a naked emperor. Unfortunately, pointing to 7 anecdotal papers as evidence that that is the case, is plain ludicrous. As far as I can see, there wasn't even a control group (say, 20 manuscripts submitted to analytical journals, 20 manuscripts submitted to STEM subjects).<br />
<br />
To my mind, if you wish to criticize social constructivism (and much critical that I wholeheartedly agree with has been published over the last few decades) don't avail yourself of childish activities like these kinds of hoaxes. Show by means of analysis and argument that, and why, the social constructivism emperor is naked.<br />
<br />
The process of producing and publishing peer reviewed academic content relies on an assumption of good intent and genuineness among authors. Obviously, this is not justified in all cases, that's where critical responses and retractions come in handy. The last thing needed is a cottage industry of 'gotcha authors' like our hoaxter trio. They could and should have spend their time producing one sound academic paper taking on social constructivism, placing it in a top-notch journal, and subsequently enjoying the fireworks of rebuttal and response. That's how progress in the academy is facilitated.<br />
<br />
I have sat on this for a good week, because I wasn't sure whether I should bother writing a response. On the one hand I share many of their concerns, on the other hand, this was such a time wasting pointless exercise, it boggles the mind smart people would have resorted to that sort of thing. <br />
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<br />udo schuklenkhttp://www.blogger.com/profile/16463788271983027260noreply@blogger.comtag:blogger.com,1999:blog-21709705.post-15318702584157590662018-10-08T12:39:00.002-04:002018-10-08T14:44:57.020-04:00Ethics Violations: Canadian Medical Association exits World Medical AssociationThe Canadian Medical Association (CMA) has left the World Medical Association (WMA) because of ethics failings of its new President, Dr Leonid Eidelman. Apparently Eidelman's inaugural speech was in parts plagiarised from content produced, among others, by Dr Christopher Simpson, a former President of the Canadian Medical Association. As far as Eidelman is concerned, he says his speech was written by speech writers, and he was unaware of the plagiarism.<br />
<br />
Let me just say that Eidelman ought to resign, whether or not his speech was written by others. He delivered plagiarized content as if it was his own, so the fact that he used speech writers is irrelevant, he remains responsible for what he says. The WMA did not force Eidelman to resign, it did not fire him.<br />
<br />
The thing with the WMA is this: ethics failings are kind of power for the cause. That's what it does. It is a morally bankrupt organization, and it has been a morally bankrupt organization for a long time. Its plagiarizing current President, by comparison, nearly falls into the category of 'good guy'.<br />
<br />
In 1992 it wisely chose to elect a Nazi war criminal as its President, Dr Hans Sewering. Sewering was reportedly a member of the SS and the Nazi party. He signed death warrants for some 900 children with disabilities who were then murdered in a Nazi extermination centre.<br />
<br />
In 2010 the WMA elected Ketan Desai to is President. He was found guilty by the High Court of Delhi of corruption and abuse of power in 2001. The High Court ordered his removal from his job as President of the Medical Council of India. Investigators had charged him with seeking a massive bribe from a private medical college in return for approving admissions of students for the 2010-2011 academic year.<br />
<br />
So, the WMA has a knack for picking the wrong people. The only thing that is odd about the CMA's timing is that they chose to resign their membership from the WMA over a comparably trifling matter, namely a vanity speech giving by its incoming President. Desai's failings were apparently of no concern at the time to the CMA.<br />
<br />
The CMA's President, Dr Gigi Osler is quoted in the <a href="https://www.thestar.com/news/canada/2018/10/06/canadian-medical-association-resigns-from-world-body-amid-plagiarism-accusations.html">Toronto Star </a>newspaper, '“We must continue to hold ourselves to a high standard of
professionalism and ethical behaviour,” said Osler. “We are going to
strive to uphold honesty, humility, integrity and prudence.”<br />
<br />
This, of course, is the same medical association whose views on professionalism are akin to that of a trade union rather than that of a proud professional association. Dr Jeff Blackmer, the Director of the Canadian Medical Association’s Ethics Office wrote on behalf of the association that medical doctors are neither obliged to provide abortion services, nor are they obliged to transfer patients on to doctors they know will provide abortions to women seeking one. He holds the same view on medical aid in dying, and - one wonders - on what other medical services. Of course, doctors are monopoly providers of this service, abortion is legal in Canada, and pregnant women are entitled to receive that service free of charge (ie publicly funded) from said monopoly providers. The CMA's take is that the refusal to provide or transfer is perfectly compatible with professional conduct, when, <a href="https://jme.bmj.com/content/43/4/234">by definition, that isn't the case</a>.<br />
<br />
Apparently Eidelman and Blackmer got into a bit of a bunfight over Eidelman lecturing the CMA over its support for medical aid in dying. <a href="https://twitter.com/jblackmerMD/status/1048628453719904256">Blackmer rightly criticises Eidelman</a> for claiming that the CMA thought assisted dying is comparable in terms of its seriousness to prescribing antibiotics.<br />
<br />
It appears to be the case that the WMA has again managed to appoint a reactionary doctor with questionable ethics as its President. One does wonder why anyone would take too seriously any longer its pronouncements on matters medical ethics. In its conduct it really is not dissimilar to the Roman Catholic Church. There is a lot of hand waving and posturing, but when it comes to actual conduct, it disqualifies itself as an arbiter of matters ethics. <br />
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So, kudos to the CMA for leaving the WMA; even though the point in time is ill-chosen, it was a long overdue decision.<br />
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<br />udo schuklenkhttp://www.blogger.com/profile/16463788271983027260noreply@blogger.comtag:blogger.com,1999:blog-21709705.post-6612183983334919662018-08-14T12:02:00.002-04:002018-10-23T14:39:01.333-04:002018 Google Scholar Metrics for Bioethics Journals<div class="MsoNormal">
<span style="background-color: white; color: #333333; font-family: "arial" , "tahoma" , "helvetica" , "freesans" , sans-serif; font-size: 14.8500003814697px; line-height: 16.6319999694824px;">Quite possibly the below table will be displayed in odd ways on your screen. </span><br />
<br style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.8500003814697px; line-height: 16.6319999694824px;" />
<span style="background-color: white; color: #333333; font-family: "arial" , "tahoma" , "helvetica" , "freesans" , sans-serif; font-size: 14.8500003814697px; line-height: 16.6319999694824px;">Usual
CoI blurb applies. I co-edit two of the journals in this list. List
up-dated August 2018. Any mistakes are my own, please alert me if you
discover discrepancies between what I am reporting and what you're able
to find on google scholar. </span></div>
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<span style="background: silver; color: #222222; font-size: 10pt;"><span style="background-color: white; color: #333333; font-family: "arial" , "tahoma" , "helvetica" , "freesans" , sans-serif; font-size: 14.85px; line-height: 16.632px;"><span style="font-size: x-small;"><br class="Apple-interchange-newline" /></span></span></span> <b>h5 h5-median</b></div>
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<ol>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">Nursing Ethics 37 51 </span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">Journal of Medical Ethics 33 40 </span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Journal of Law, Medicine and Ethics 32 40</span> </span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;"></span>Science and Engineering Ethics<span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; display: inline !important; float: none; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"> </span><span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; font-family: "arial" , "helvetica" , sans-serif; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"> 30 45</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">The American Journal of Bioethics 30</span><span style="font-family: "arial" , "helvetica" , sans-serif;"> 41</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">bmc medical ethics 28 38</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">Bioethics 26 37</span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;"> </span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">Medicine, Health Care and Philosophy 24 28</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">Neuroethics 22 37</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">Hastings Center Report 22 30 </span></li>
<li><span style="background: white; color: #222222; font-size: 10.0pt;"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; font-size: small;">Journal of Bioethical Inquiry </span><a href="https://scholar.google.co.uk/citations?hl=en&vq=med_bioethics&view_op=list_hcore&venue=2PTaW0VPz2IJ.2015"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; font-size: small; text-decoration: none;">19</span></a><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; font-size: small;"> 22</span></span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;"> American Journal of Bioethics Neuroscience 18 26</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;"> Journal of Medicine and Philosophy </span><a href="https://scholar.google.co.uk/citations?hl=en&vq=med_bioethics&view_op=list_hcore&venue=pqVFYKdK69YJ.2015"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; text-decoration: none;">18</span></a><span style="font-family: "arial" , "helvetica" , sans-serif;"> 25 </span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">Journal of Empirical Research on Human Research Ethics </span><a href="https://scholar.google.co.uk/citations?hl=en&vq=med_bioethics&view_op=list_hcore&venue=vhkAs2K91KgJ.2015"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; text-decoration: none;">1</span></a><span style="font-family: "arial" , "helvetica" , sans-serif;">8 21</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="background: white; color: #222222; font-size: 10.0pt;"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; font-size: small;">Developing World Bioethics </span><a href="https://scholar.google.co.uk/citations?hl=en&vq=med_bioethics&view_op=list_hcore&venue=ksUoo95MlnMJ.2015"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; font-size: small; text-decoration: none;">1</span></a><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; font-size: small;">6 21</span></span></span> </span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">Nursing Philosophy 16 18</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">Health Care Analysis 15 22</span></li>
<li><span style="background: white; color: #222222; font-size: 10.0pt;"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; font-size: small;">Cambridge Quarterly of Healthcare Ethics </span><a href="https://scholar.google.co.uk/citations?hl=en&vq=med_bioethics&view_op=list_hcore&venue=5NBxhBJ1zY4J.2015"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; font-size: small; text-decoration: none;">15</span></a><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; font-size: small;"> 20</span></span></li>
<li><span style="background: white; color: #222222; font-size: 10.0pt;"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; font-size: small;"><span style="background: white; color: #222222; font-size: 10.0pt;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: small;">Public Health Ethics </span><a href="https://scholar.google.co.uk/citations?hl=en&vq=med_bioethics&view_op=list_hcore&venue=XaniIuAs-CQJ.2015"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; font-size: small; text-decoration: none;">14</span></a><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: small;"> 17 </span></span></span></span></li>
<li><span style="background: white; color: #222222; font-size: 10.0pt;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: small;">Theoretical Medicine and Bioethics </span><a href="https://scholar.google.co.uk/citations?hl=en&vq=med_bioethics&view_op=list_hcore&venue=Xh9WbfbuS9kJ.2015"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; font-size: small; text-decoration: none;">13</span></a><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: small;"> 21</span></span></li>
<li><span style="background: white; color: #222222; font-size: 10.0pt;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: small;"><span style="font-family: "arial" , "helvetica" , sans-serif;">NanoEthics </span><a href="https://scholar.google.co.uk/citations?hl=en&vq=med_bioethics&view_op=list_hcore&venue=i8Dv-pVu4hMJ.2015"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; text-decoration: none;">13</span></a><span style="font-family: "arial" , "helvetica" , sans-serif;"> 18</span> </span></span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">Indian Journal of Medical Ethics </span><a href="https://scholar.google.co.uk/citations?hl=en&vq=med_bioethics&view_op=list_hcore&venue=OCAxMz-h3iUJ.2015"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; text-decoration: none;">13</span></a><span style="font-family: "arial" , "helvetica" , sans-serif;"> 17</span><span style="background: white; color: #222222; font-size: 10.0pt;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: small;"><span style="background-color: white; font-family: "arial" , "helvetica" , sans-serif;"> </span></span></span></li>
<li><span style="background: white; color: #222222; font-size: 10.0pt;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: small;"><span style="background-color: white; font-family: "arial" , "helvetica" , sans-serif;">Kennedy Institute of Ethics Journal 13 17</span></span></span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">The Journal of Clinical Ethics </span><a href="https://scholar.google.co.uk/citations?hl=en&vq=med_bioethics&view_op=list_hcore&venue=fiJO18YSuVcJ.2015"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; text-decoration: none;">12</span></a><span style="font-family: "arial" , "helvetica" , sans-serif;"> 19</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">Journal of Medical Ethics and History of Medicine 12 19</span><span style="background: white; color: #222222; font-size: 10.0pt;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: small;"><span style="background-color: white; font-family: "arial" , "helvetica" , sans-serif;"> </span></span></span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">Perspectives in Biology and Medicine</span> <span style="font-family: "arial" , "helvetica" , sans-serif;">12 15</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">Narrative Inquiry in Bioethics</span> <span style="font-family: "arial" , "helvetica" , sans-serif;">11 15</span></li>
<li><span style="background-color: white;"><span style="font-family: "arial" , "helvetica" , sans-serif;">HEC Forum </span><a href="https://scholar.google.co.uk/citations?hl=en&vq=med_bioethics&view_op=list_hcore&venue=jabbVGy0Lm8J.2015"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; text-decoration: none;">10</span></a><span style="font-family: "arial" , "helvetica" , sans-serif;"> 17</span></span></li>
<li><span style="background-color: white;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Ethik in der Medizin 10 13</span> </span></span></li>
<li>American Journal of Bioethics Empirical Bioethics 8 10</li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">International Journal of Feminist Approaches to Bioethics </span><a href="https://scholar.google.co.uk/citations?hl=en&vq=med_bioethics&view_op=list_hcore&venue=-pBPGkt41DAJ.2015"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; text-decoration: none;">8</span></a><span style="font-family: "arial" , "helvetica" , sans-serif;"> 10</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">Monash Bioethics Review 7 12</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">South African Journal of Bioethics and Law</span> <span style="font-family: "arial" , "helvetica" , sans-serif;"> 7 9</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">JAHR - European Journal of Bioethics 5 9</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">Asian Bioethics Review 5 7</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;">The New Bioethics 5 7</span> </span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">Christian Bioethics 5 6</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;">National Catholic Bioethics Quarterly 4 6</span> </span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">Journal international de bioethique</span> <span style="font-family: "arial" , "helvetica" , sans-serif;"> 4 5</span></li>
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*<span style="color: #222222; font-family: "arial" , sans-serif; font-size: 10pt;">h5-index
is the h-index for articles published in the last 5 complete years. It
is the largest number h such that h articles published in 2013-2017 have
at least h citations each</span></div>
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<span style="color: #222222; font-family: "arial" , sans-serif; font-size: 10pt;">**h5-median for a publication is the median number of citations for the articles that make up its h5-index</span></div>
<br />udo schuklenkhttp://www.blogger.com/profile/16463788271983027260noreply@blogger.comtag:blogger.com,1999:blog-21709705.post-70641448839246293472018-08-12T08:58:00.002-04:002018-08-14T14:27:46.886-04:00Trying to travel on American Airlines from Rio de Janeiro to Miami<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0QRRYr8rRtsOKmKikaYZWE6_0XiILRITwvsR47Q02mQ2R5kiUnO49dtOXf0qFxTCLdyssv8IkTcGGNIizQuzzHA7oDUwUii6PGavqSgGYDrVTWj7PzewR_bCLiZvRCpWE34Sj/s1600/688866.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="159" data-original-width="929" height="67" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0QRRYr8rRtsOKmKikaYZWE6_0XiILRITwvsR47Q02mQ2R5kiUnO49dtOXf0qFxTCLdyssv8IkTcGGNIizQuzzHA7oDUwUii6PGavqSgGYDrVTWj7PzewR_bCLiZvRCpWE34Sj/s400/688866.jpg" width="400" /></a></div>
Here's a tale of what goes wrong when airlines are so busy saving money on staff that they forget about their secondary function, namely carrying passengers in a timely fashion from A to B. Their primary function, admittedly, is to maximize profits for their shareholders...<br />
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So, here is what happened to me and a Boeing 777 full of passengers, it shows organizational as well as professional failings on various levels.<br />
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I was supposed to leave on flight AA 905 from Rio de Janeiro (GIG) to Miami (MIA). Scheduled departure August 09 8:40pm for a 4:30 am arrival on August 10. The plane would have sat on the tarmac pretty much all day, from its early am arrival from either JFK or MIA. Keep that in the back of your mind as you read-on.<br />
<br />
We board on-time, everyone is ready for an on-time departure. There were some issues with an odd bloke who wandered about the cabin while the plane was taxiing. Anyhow, so it began: They had engine problems. An external aircon unit had to be deployed, because it got quickly boiling hot in the cabin. The initially talkative Captain on this flight disappeared soon completely. Keep that also in mind as you read-on.<br />
<br />
For a number of hours passengers endured a complete communications break-down. At no time were we told what the problem was, whether or not it could be fixed, and/or how long it would realistically take. We were fed continuous misinformation like 'we will be airborne momentarily', 'the unacceptable temperature in the cabin will decrease rapidly after the second engine comes on' (that engine never came on). That was after the Captain made a brief appearance uttering things like we would have to wait for paperwork to be completed, and that that would take about 45 minutes. Right after that that much talked about second engine failed to come on and it got really hot. As I said, the Captain was missing in communications action ever since.<br />
<br />
Passengers became irate because of the communications break-down caused by the Captain in charge. The flight attendants made-do with the false information they had been given and passengers rightly did not believe a word they uttered any longer. I did feel sorry for them, because none of that was their fault, but they bore the brunt of passenger anger.<br />
<br />
Discipline on the plane began to break-down. People were told that they could leave if they wanted to. Some people left, others started arguing with the flight attendants, refusing to leave or sit down until they would be promised that their luggage would be unloaded. The flight attendants could not promise that, so there these passengers were, not leaving, not sitting down. Perhaps cognizant of the PR disasters security personnel on planes cause, nobody forced these passengers to either sit down or get off the bus.<br />
<br />
Eventually we were told that *really* we were ready for departure, if people would please just sit down so that we could leave. Sadly the majority of passengers did not respond to that directive anymore. Some wanted to get off, but not without their luggage, others just stood in the aisles and were angry in a directionless way, a few sensible people tried to coax standing passengers to take their seats, without much success. I wonder whether mass hysteria looks like this. None of this made any sense to me. Well, we did not leave on his occasion because of the breakdown in cabin discipline that was a direct result of American Airlines staff feeding us misinformation for many hours. I just sat down in my seat and watched movies, while watching the drama unfold around me. <br />
<br />
I carefully monitored my app, waiting for the inevitable, the cancellation of the flight. The inevitable happened, my flight was rescheduled for the next day's afternoon. Interestingly, I had the flight cancellation information before the flight attendants. You do wonder whether they are the absolutely last people on the planet to be informed about anything that's going on on their flights. We were bused to a downtown hotel and picked up the next morning at 11 am for a 3:30 pm departure. All that was fairly professional, and while the hotel was basic, I have no complaints. <br />
<br />
At the airport we duly checked in, boom, shortly after we cleared security and customs, came the message that the flight was delayed to 1:30 am, and that we would be bused back to a hotel. I trust you appreciate the staggering incompetence, on an organizational level, that would be required to result in such an activity. Apparently they had no crew to staff that flight. Well, *that* American Airlines surely would have known prior to dragging people in several coaches from the hotel to the airport. Incidentally, this pointless leasing of coaches and drivers to ferry passengers forth and back between the airport and the hotel is unlikely to contribute to the primary reason for existing of listed companies, profit maximization. I won't even go into the self-inflicted reputational damage.<br />
<br />
On the bright side, this seasoned traveler didn't like the idea at all, of sharing the flight with all those angry passengers, so I re-booked myself on the regular 8:40pm flight. Sensibly American Airlines had allocated our disaster flight crew to this flight, so they would not have to face those furious passengers again. I was somewhat less assured, to be honest. And there he was, our cheerful, talkative Captain from said disaster flight. I knew, of course, should there be a problem, he would just dive for cover and be nowhere to be seen or heard.<br />
<br />
I think there are several lessons in this:<br />
<br />
1) check your planes (especially if they sit on the tarmac for a day) prior to boarding.<br />
2) communicate precisely to your passengers what the nature of the issue is, how long it might take, and admit uncertainty if you are uncertain (nothing is worse for trust and discipline if it becomes obvious that information provided is patently false, and was known to be false when it was provided).<br />
3) maintain discipline in the cabin.<br />
4) ensure the Captain shows themselve to be in charge.<br />
<br />
If these rules had been followed we would have almost certainly departed that evening. <br />
<br />
I still do not know whether that flight left at 1:30 am, because by the time my flight left it had disappeared from the airport departure information displays. On a cheerful note, the 777 I had rebooked myself on had newer seats. I slept definitely better than on my flight to Rio. Not that you wanted to know.<br />
<br />
August 14, 2018update: AA initially told me that I had no case for compensation because the above issue was caused by weather. When I pointed out to them that none of what I described had anything to do with weather, they promised to look at their records again. They followed up on this with an apology and the offer of a 250 $ voucher of 15k miles. I accepted the travel voucher. Case closed. <br />
<br />
<br />
<br />
<br />
<br />
<br />udo schuklenkhttp://www.blogger.com/profile/16463788271983027260noreply@blogger.comtag:blogger.com,1999:blog-21709705.post-73826917459920913962018-05-28T11:34:00.001-04:002018-05-28T11:34:40.914-04:00Bioethics culture wars – 2018 edition: Alfie EvansHere's <a href="https://onlinelibrary.wiley.com/doi/abs/10.1111/bioe.12466">my current Editorial in <i>Bioethics</i></a><br />
<br />
<article>
<section class="article-section article-section__full">
<div class="article-section__content" id="bioe12466-sec-0001">
When health‐related tragedy befalls newborns, bioethical culture warriors are never
far behind. The sad case of Alfie Evans<a class="noteLink scrollableLink" href="https://onlinelibrary-wiley-com.proxy.queensu.ca/doi/full/10.1111/bioe.12466#bioe12466-note-0001" title="Link to note">1</a> seemingly opened up renewed campaign opportunities, and every opportunist, from the
leader of the Roman Catholic Church to the Italian government, as well as a line‐up
of minor academics, newspaper columnists and social media warriors, chimed in to score
political points.
<br />
<a href="https://wol-prod-cdn.literatumonline.com/cms/attachment/b7c8860a-d3d9-4107-9eeb-e3e433409f59/bioe.2018.32.issue-5.cover.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img alt="Publication cover image" border="0" height="200" src="https://wol-prod-cdn.literatumonline.com/cms/attachment/b7c8860a-d3d9-4107-9eeb-e3e433409f59/bioe.2018.32.issue-5.cover.jpg" width="151" /></a>Alfie Evans was as 23‐month‐old toddler suffering from a degenerative brain disease
that led tragically to him eventually being in a semi‐vegetative state extending over
more than a year. The specialists caring for him at the UK's Alder Hey Children's
Hospital concluded that the boy suffered a ‘catastrophic degradation of his brain
tissue’, and they asked for court permission to withdraw ventilator support, because
in their considered judgement continuing ventilator support was not in the child's
best interest. The parents fought the clinical judgement, both in the courts, and
on social media. They travelled to Rome to meet the leader of, presumably, their church,
the Pope. The Pope duly tweeted his support for the family, in line with his organization's
categorical stance on the maintenance of human life, regardless of its quality. Among
others, senior Brazilian staff members of the same organization issued a video message
demanding that the UK government pay for the continuing futile care of Alfie Evans.<a class="noteLink scrollableLink" href="https://onlinelibrary-wiley-com.proxy.queensu.ca/doi/full/10.1111/bioe.12466#bioe12466-note-0002" title="Link to note">2</a> Obviously Brazil's religious warriors had little else to do in their own backyard.
Assuntina Morresi, a biochemistry professor and a member of the Italian government's
National Bioethics Committee, posted a photo of the entrance to a German Nazi concentration
camp with the accompanying headline: ‘Gran Bretagna oggi’ (Great Britain today).<a class="noteLink scrollableLink" href="https://onlinelibrary-wiley-com.proxy.queensu.ca/doi/full/10.1111/bioe.12466#bioe12466-note-0003" title="Link to note">3</a> Professor Morresi is not alone: in a commentary, Charles Camosy, a theologian at
a Catholic college in New York City, also tried to put the case in historical perspective
by raising the spectre of the Catholic Church objecting to the Nazi euthanasia program
for the disabled.<a class="noteLink scrollableLink" href="https://onlinelibrary-wiley-com.proxy.queensu.ca/doi/full/10.1111/bioe.12466#bioe12466-note-0004" title="Link to note">4</a> Unsurprisingly these kinds of ahistorical missives are published in media aimed squarely
at ideological fellow travellers, they are ideological echo chamber activities designed
to mobilize one's troops. There is invariably much talk about disrespect of the disabled,
as if there is no difference between a disabled child living a life worth living and
a child whose brain has been irreversibly catastrophically damaged. Add to that a
liberal amount of second guessing and questioning of the clinical judgement made by
clinicians involved first‐hand in the care of the toddler by academics, activists
and religious lobbyists with no clinical qualifications and no first‐hand knowledge
of the facts of the matter.<br />
<br />
Enter stage right: Ted Cruz. Not unexpectedly the United States’ best‐known culture
warrior, Texas Senator Ted Cruz stepped into the fray with his own press release,
likely less directed at Britain and more directed at his donors. He wrote (<i>inter alia</i>), that what was happening in the UK was a ‘grim reminder that systems of socialized
medicine like the NHS vest the state with power over human lives, transforming citizens
into subjects.’ This is utter nonsense, and, even if it were true, it's unclear how
Cruz's preferred private healthcare system would change that situation, given that
in a private healthcare system a for‐profit entity would decide how much money would
be made available for the care of particular patients. Futile care typically is justifiably
not funded <i>ad infinitum</i> by for‐profit health insurance companies either. Still, this minor detail got lost
in the agitation and propaganda efforts by conservative U.S. politicians weighing
in on this case.<a class="noteLink scrollableLink" href="https://onlinelibrary-wiley-com.proxy.queensu.ca/doi/full/10.1111/bioe.12466#bioe12466-note-0005" title="Link to note">5</a><br />
<br />
Remarkably, the government of Italy issued a citizenship certificate for the toddler
to enable him to be treated in a Catholic hospital. Sensing how inappropriate this
action was, the Italian Embassy in the UK stressed that the citizenship was merely
meant as a signal to the court that the country would be willing to take him in should
the UK court let him be transferred. That, of course, was denied by the court, precisely
because nothing would have been gained <i>for</i> the boy by this activity.<br />
<br />
A predictable consequence of the flurry of activism across the globe was that a sufficiently
large number of activists was motivated to try to storm the hospital where the boy
was cared for. Yes, they tried to storm the hospital! They even, for a brief period,
managed to block an ambulance from entering the hospital. Without any sense of proportion,
they call(ed) themselves <i>Alfie's Army</i>. No, I'm not kidding, <i>army</i>! Not terribly surprising: if you genuinely think that you are fighting a crime akin
to the holocaust you will think about it in fairly militant terms. Agitation and propaganda
have consequences.<br />
<br />
I appreciate that well‐meaning people can hold different views on cases like this.
One could, for instance, argue that if parents – or their supporters – are willing
to pay for futile care provided to patients like Alfie Evans, the state should leave
it to parents to decide what is in their children's best interest. It is not a view
I would support, because I would be concerned that parents in such situations are
vulnerable to making choices that satisfy their own psychological needs, potentially
at great cost to the children whose best interest takes a backseat. If futile care
is joined by additional suffering visited upon the patient (it is unlikely this was
the case with this patient), such decisions should not be left to parents alone to
decide. It is arguably unfair to leave grieving and distressed parents with the burden
that such decisions entail. However, this certainly is a legitimate question to ask
and it is one where well‐meaning, well‐informed people can agree to disagree.<br />
<br />
What is unacceptable for anyone who wishes to engage in these debates, is to abuse
such catastrophically ill children for their own ideological conquests and culture
wars. Nothing of what happened in Britain (and other countries like it) has anything
at all to do with what happened in Nazi Germany. Such ahistorical comparisons are
deeply offensive to the victims of the holocaust.<br />
<br />
UK bioethicist Iain Brassington, to my mind, hit the nail on its head when he wrote
in a commentary, ‘what we see here is a child being bounced around to satisfy the
desires of a number of adults.’<a class="noteLink scrollableLink" href="https://onlinelibrary-wiley-com.proxy.queensu.ca/doi/full/10.1111/bioe.12466#bioe12466-note-0006" title="Link to note">6</a> Politicians, leaders of global religious organizations, and academics ideologically
aligned with the latter have reason to reflect on the morality of their own actions,
that is the abuse of tragedies like Alfie Evans to promote their own ideological agendas.
<br />
</div>
<div class="article-section__content article-section__content-notepres">
<h2 class="article-section__title" id="notesSection1">
Footnotes</h2>
<ul class="custom-style-list noteList">
<li id="bioe12466-note-0001"><span class="number">1 </span>
BBC News. (2018). Who was Alfie Evans and what was the row over his treatment? <i>BBC News</i> April 28. <a class="linkBehavior" href="http://www.bbc.com/news/uk-england-merseyside-43754949">http://www.bbc.com/news/uk-england-merseyside-43754949</a> [Accessed April 29, 2018]
</li>
<li id="bioe12466-note-0002"><span class="number">2 </span>
Brazilian Bishops support Alfie. April 22, 2018. <a class="linkBehavior" href="https://gloria.tv/video/6LPxwNLMsNkSBAqBF8aj3cdNy">https://gloria.tv/video/6LPxwNLMsNkSBAqBF8aj3cdNy</a> [Accessed April 29, 2018]
</li>
<li id="bioe12466-note-0003"><span class="number">3 </span>
Facebook post by Professor Morresi: <a class="linkBehavior" href="https://www.facebook.com/photo.php?fbid=1995113310532730&set=ecnf.100001022418993&type=3&theater">https://www.facebook.com/photo.php?fbid=1995113310532730&set=ecnf.100001022418993&type=3&theater</a> [Accessed April 29, 2018]
</li>
<li id="bioe12466-note-0004"><span class="number">4 </span>
Camosy, C. (2018). Alfie Evans and our moral crossroads. <i>First Things</i> April 25. <a class="linkBehavior" href="https://www.firstthings.com/web-exclusives/2018/04/alfie-evans-and-our-moral-crossroads">https://www.firstthings.com/web-exclusives/2018/04/alfie-evans-and-our-moral-crossroads</a> [Accessed April 29, 2018]
</li>
<li id="bioe12466-note-0005"><span class="number">5 </span>
Freiburger, C. (2018). Senator Ted Cruz, conservatives speak out for Alfie Evans.
<i>Lifesite News</i> <a class="linkBehavior" href="https://www.lifesitenews.com/news/u.s.-congressmen-conservatives-speak-out-for-alfie-evans1">https://www.lifesitenews.com/news/u.s.-congressmen-conservatives-speak-out-for-alfie-evans1</a> [Accessed April 29, 2018]
</li>
<li id="bioe12466-note-0006"><span class="number">6 </span>
Brassington, I. (2018). Alfie Evans: Please, just stop. <i>Journal of Medical Ethics Blog</i> April 24. <a class="linkBehavior" href="http://blogs.bmj.com.proxy.queensu.ca/medical-ethics/2018/04/24/alfie-evans-please-just-stop/">http://blogs.bmj.com.proxy.queensu.ca/medical-ethics/2018/04/24/alfie-evans-please-just-stop/</a> [Accessed April 29, 2018]
</li>
</ul>
</div>
</section>
</article>udo schuklenkhttp://www.blogger.com/profile/16463788271983027260noreply@blogger.comtag:blogger.com,1999:blog-21709705.post-21694589386246117512018-04-12T12:04:00.000-04:002018-04-12T12:05:13.660-04:00Back to blogging - stuff is happening :)I have been pretty quiet on the blogging frontiers during the last few months. I have been juggling various manuscripts, including a book manuscript, as well as teaching, so basically I was too tired to blog much (well, too tired to blog at all).<br />
<br />
Anyhow, so here's an update:<br />
<br />
<a href="https://oup.silverchair-cdn.com/oup/backfile/Content_public/Journal/bmb/Issue/125/1/1/m_bmbull_125_1_cover.png?Expires=1523639874&Signature=4SJRs5zoRDa9UTYt1nJ2gPGbxHx6R0JuZlRJio3SvuLIV7sFZ3oofq7L-qWzvSLM-U6XQi1G00sjd5COxKCoKHFxII~uUdepC4O5t5mQLcvZKqc5jlMSKXtdqoltBFXVV9SN-BveKSH3~JQR2C674BKOxsf6MYhNpaldhXp6FsoJd60N~ArNcNPej-~-e2bEmZRh-RDHmMbgPfiMZtOzXx4ZLBbBZ7I-9qTEKWr1MAwGJe03HULVczjq0l48OCmZBpPwhG~IoZYBSzY0hCop4txJwqbxvbcsFnJXS8vOFBxmgwfkFK2CA1fU-J3l5Rsnq1sB67ZFOBlT-AryqJlgzA__&Key-Pair-Id=APKAIE5G5CRDK6RD3PGA" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img alt="Issue Cover" border="0" class="fb-featured-image widget-IssueInfo__img" height="200" id="issueImage" src="https://oup.silverchair-cdn.com/oup/backfile/Content_public/Journal/bmb/Issue/125/1/1/m_bmbull_125_1_cover.png?Expires=1523639874&Signature=4SJRs5zoRDa9UTYt1nJ2gPGbxHx6R0JuZlRJio3SvuLIV7sFZ3oofq7L-qWzvSLM-U6XQi1G00sjd5COxKCoKHFxII~uUdepC4O5t5mQLcvZKqc5jlMSKXtdqoltBFXVV9SN-BveKSH3~JQR2C674BKOxsf6MYhNpaldhXp6FsoJd60N~ArNcNPej-~-e2bEmZRh-RDHmMbgPfiMZtOzXx4ZLBbBZ7I-9qTEKWr1MAwGJe03HULVczjq0l48OCmZBpPwhG~IoZYBSzY0hCop4txJwqbxvbcsFnJXS8vOFBxmgwfkFK2CA1fU-J3l5Rsnq1sB67ZFOBlT-AryqJlgzA__&Key-Pair-Id=APKAIE5G5CRDK6RD3PGA" width="153" /></a>Ruth Chadwick and I managed to send a first rough draft of our textbook to Wiley to have it externally reviewed. It will need quite a bit more work, but we hope to get this done during the summer months.<br />
<br />
I have a lengthy review article on the ethics of Conscientious Objection accommodation in the British Medical Journal. <a href="https://academic.oup.com/bmb/advance-article-abstract/doi/10.1093/bmb/ldy007/4955771?redirectedFrom=fulltext">You can find it here. </a><br />
<br />
The title is: Conscientious objection in medicine: accommodation versus professionalism and the public good.<br />
<br />
<br />
<a href="http://journals.sagepub.com/na101/home/literatum/publisher/sage/journals/content/cpab/2018/cpab_63_4/cpab_63_4/20180409/cpab_63_4.cover.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img alt="Issues" border="0" height="156" src="https://journals.sagepub.com/na101/home/literatum/publisher/sage/journals/content/cpab/2018/cpab_63_4/cpab_63_4/20180409/cpab_63_4.cover.png" width="120" /></a>I also, jointly with Justine Dembo and Jonathan Reggler have an Open Access paper in the Canadian Journal of Psychiatry on medical aid in dying and depression. <a href="http://journals.sagepub.com/doi/full/10.1177/0706743718766055">You can find it here. </a><br />
<br />
The title is: 'For their own good': A Response to Popular Arguments Against Permitting Medical Aid in Dying (MAID) where Mental Illness Is the Sole Underlying Condition.<br />
<br />
<br />
<a href="https://www.akademie-oegw.de/typo3temp/_processed_/f/e/csm_Blickpunkt_1_2018_576f99927f.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img alt="" border="0" height="200" src="https://www.akademie-oegw.de/typo3temp/_processed_/f/e/csm_Blickpunkt_1_2018_576f99927f.jpg" width="138" /></a>There is also a completed book chapter to report in a Palgrave MacMillan handbook on, I think, political philosophy. I did that jointly with an undergraduate student at Queen's, Benjamin Zolf.<br />
<br />
And there are various Editorial type papers, including (in German) <a href="https://www.akademie-oegw.de/fileadmin/customers-data/Blickpunkt/Blickpunkt_2018/AOEG_Blickpunkt_1801_180226RZ.pdf">this one on the use of ethical deliberation in the decision-making on public health policy.</a>udo schuklenkhttp://www.blogger.com/profile/16463788271983027260noreply@blogger.comtag:blogger.com,1999:blog-21709705.post-19213325089417502152018-04-12T11:06:00.000-04:002018-04-12T11:06:14.550-04:00How can we ensure that the global south benefits from and contributes to the field of bioethics? Here's a re-post of my <a href="https://onlinelibrary.wiley.com/doi/full/10.1111/dewb.12184">Editorial</a> in the <a href="https://onlinelibrary.wiley.com/toc/14718847/18/1">current issue of Developing World Bioethics</a>. I will update toward the end of the Editorial relevant information about the upcoming IAB World Congress in India, as some things (like the location) have changed since the Editorial was published.<br />
<br />
<article>
<section class="article-section article-section__full">
<div class="article-section__content" id="dewb12184-sec-0001">
There has been a legitimate debate going on for many years about the question of how
we can ensure that colleagues in the global south can both benefit from journals such
as this, as well as contribute constructively to it.<br />
<br />
<a href="https://wol-prod-cdn.literatumonline.com/cms/attachment/7c68c6fd-75b8-4867-ade3-6aafe843fc32/dewb.2018.18.issue-1.cover.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img alt="Cover image" border="0" height="320" src="https://wol-prod-cdn.literatumonline.com/cms/attachment/7c68c6fd-75b8-4867-ade3-6aafe843fc32/dewb.2018.18.issue-1.cover.jpg" width="240" /></a>The issue of access to subscription‐based journals has been litigated ad nauseam and
I do think global publishers have done by and large a decent job in terms of implementing
with WHO and other agencies myriad access themes available to those countries too
resource‐constrained to afford regular subscriptions.<a class="noteLink scrollableLink" href="https://onlinelibrary.wiley.com/doi/full/10.1111/dewb.12184#dewb12184-note-1001" title="Link to note">1</a><br />
<br />
Some authors disagree, insisting that only Open Access journals, a supposedly superior
business model, can address the access problem adequately. And they are right, Open
Access journals, by definition, pose no access problems of the kind subscription‐based
journals pose. Sadly, having your cake and eating it too rarely works in the real
world, and so these authors, having resolved the access to academic research problem,
are faced with a different problem they did not have before. Open Access journals
can only survive as viable enterprises if a sufficiently high number of authors pay
what are often expensive article processing charges, or APCs. These journals often
offer their equivalent to the access schemes subscription‐based journals have put
in place, namely differential fees or fee waivers for those who absolutely cannot
afford to pay.<br />
<br />
Short of asking academics to exploit themselves by volunteering to produce and disseminate
academic journals and their content, reliably, over decades, <i>someone</i> will have to pay for the resource intensive production of journals and to ensure
the reliable availability of their content.<br />
<br />
I have yet to see from those complaining about access problems <i>realistic</i> solutions to this challenge. They mostly, and typically correctly identify the problem,
but beyond grandstanding they offer no answers. They expect <i>someone</i> else to sort things out for them.<br />
<br />
As I said, authors in the global south can access our content either by means of the
access schemes mentioned earlier, or by simply emailing the authors of content they
are interested in and by asking those authors for a complimentary electronic copy
of their article. Nobody would decline such a request.<br />
<br />
I do think that a much greater challenge is to enable scholars from the global south
to participate in international conferences and workshops both to share their own
knowledge, but also to learn from colleagues and to network with a view to establishing
research partnerships and the like.<br />
<br />
I suspect you will know Facebook. I posted a photo from a workshop I had organised
in the summer of 2017 in the UK, on the most recent version of the Council for International
Organizations of Medical Sciences (CIOMS) research ethics guidelines. Not unexpectedly
a colleague, located in an upmarket London‐based university, harangued me for the
lack of diversity, perhaps most significantly, the evident lack of attendees from
the global south. That colleague was right: only two of the 25 or so workshop delegates
came from the Caribbean, while everyone else came from countries of the global north.
Of course, I had virtually no funding to organise said workshop, and everyone who
travelled there paid their own way. Nobody's flight was covered by me. I did have
inquiries from various colleagues in the global south who would have loved to attend,
but quickly gave up on the idea due to lack of funds for their travel expenses. The
colleague who criticized me quite publicly, naturally, had no funds to offer either.
It is always easier to criticize than to contribute meaningfully to change. The same,
as I tried to show, holds true for academics who refuse to acknowledge the cost involved
in producing academic journals.<br />
<br />
Some constructive attempts have been made to have a more globally representative group
of conference goers presenting at and attending international bioethics events. A
successful example of this is the Global Forum on Bioethics and Research. The GFBR
has been around for a longish time. It's funded mostly by the UK's Wellcome Trust,
the Gates Foundation, the US NIH Fogarty International Center and the UK's Medical
Research Council. I had a quick look at the GFBR's website, with a view to finding
out who governs it, and who decides on the composition of speakers and attendees of
its meetings, given that its funders reside essentially in the USA and the UK. It
seems to me as if the majority of those people are either staff members of these funding
organisations, or are past/current grant recipients.<a class="noteLink scrollableLink" href="https://onlinelibrary.wiley.com/doi/full/10.1111/dewb.12184#dewb12184-note-1002" title="Link to note">2</a> There appear to be very few truly independent scholars from the global south among
those in charge of <i>organising</i> these global events.
<br />
I don't think that this is the result of any kind of malicious intent. It's likely
a function of ‘who do we know who could serve on that steering committee who is from
Africa, Asia etc’, and who does one know? Well, the answer is likely to be: ‘someone
we have funded before’.
<br />
However, that alone does not address the question of whether or not the meetings are
failures when it comes to the question of participants from the global south. Here
are the criteria the GBFR uses to determine who among the applicants will be invited<a class="noteLink scrollableLink" href="https://onlinelibrary.wiley.com/doi/full/10.1111/dewb.12184#dewb12184-note-1003" title="Link to note">3</a> :
<br />
<br />
<ul class="unordered-list">
<li><i>Country of origin:</i> GFBR would like to ensure a representative distribution of delegates from different
regions;
</li>
<li><i>Background /current area of expertise:</i> GFBR is aimed at anyone involved or interested in health research ethics, including
researchers, policy‐makers and community representatives. GFBR seeks representation
from many different disciplines;
</li>
<li><i>Membership of an IRB/REC:</i> Membership of an Institutional Review Board / Research Ethics Committee is not a
prerequisite for attending GFBR, but may be taken into consideration;
</li>
<li><i>Experience of ethics:</i> GFBR encourage s a mixture of ‘old’ and ‘new’ faces at each forum so that participants
can productively discuss issues of concern to them and gain from the perspectives
of others. Applicants need not be experts in ethics;
</li>
<li><i>Reasons for attending the meeting:</i> GFBR seeks participants who will be able to actively contribute to the meeting and
who expect to impact on research ethics and/or pursue a career in research ethics
in their own country.
</li>
</ul>
While there is the inevitable number of people who presumably just have to be at every
such meeting (let's call them ‘old’ faces), the GFBR has succeeded in terms of attracting
a fairly wide range of delegates from the global south to its meetings over the last
few years. It's a small (and expensive) meeting, designed to host about 80 delegates,
but it's probably a meeting as good as they come on the global bioethics scene. I
truly wish there were more such events on the global bioethics events’ calendar. I
do encourage you to give thought to how this sort of event can be replicated, for
other areas of bioethics, ie. not the typically well‐funded area of research ethics
but, say, for reproductive health, global health, and so on and so forth.<br />
<br />
Let me end this editorial by encouraging you to attend the next World Congress of
the International Association of Bioethics. It will be held in Bangalore from 4–7
December 2018 under the theme <i>Health for all in an unequal world: obligations of global bioethics</i> and is locally hosted by SAMA, the resource group for women's health, the Forum for
Medical Ethics Society, and, of course, the IAB.<a class="noteLink scrollableLink" href="https://onlinelibrary.wiley.com/doi/full/10.1111/dewb.12184#dewb12184-note-1004" title="Link to note">4</a> With a bit of luck (and planning) there might be a plenary dedicated to figuring
out how to enable more delegates from the global south to attend such events. Why
don't you propose to organise such a plenary to the India‐based hosts of the event?
They might consider it quite seriously.
<br />
</div>
<div class="article-section__content article-section__content-notepres">
<h2 class="article-section__title" id="-title
">
Notes</h2>
<ul class="custom-style-list noteList">
<li id="dewb12184-note-1001"><span class="number">1 </span>
Schuklenk U. 2015. Fighting Imaginary Enemies in Bioethics Publishing. <i>Bioethics </i><b>29(8)</b>: ii‐iii. Schuklenk U, Magnus D. 2017. Justice and Bioethics: Who Should Finance Bioethics
Publishing? <i>AJOB </i><b>17(10)</b>: 1‐2.
</li>
<li id="dewb12184-note-1002"><span class="number">2 </span>
<a class="linkBehavior" href="http://www.gfbr.global/about-the-gfbr/">http://www.gfbr.global/about-the-gfbr/</a> [Accessed 28 November 2017].
</li>
<li id="dewb12184-note-1003"><span class="number">3 </span>
<a class="linkBehavior" href="http://www.gfbr.global/forum-meetings/">http://www.gfbr.global/forum-meetings/</a> [Accessed 28 November 2017].
</li>
<li id="dewb12184-note-1004"><span class="number">4 </span>
<a class="linkBehavior" href="http://www.iab2018.org/">http://www.iab2018.org</a> [Accessed 12 April 2018]
</li>
</ul>
</div>
</section>
</article>udo schuklenkhttp://www.blogger.com/profile/16463788271983027260noreply@blogger.comtag:blogger.com,1999:blog-21709705.post-12213141679547409812018-04-12T10:56:00.000-04:002018-04-12T10:56:59.394-04:00Bioethics - Expanding Scope<div class="separator" style="clear: both; text-align: left;">
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<a href="https://wol-prod-cdn.literatumonline.com/cms/attachment/55763168-7f87-4685-9ee4-ef74767bc9d9/bioe.2018.32.issue-3.cover.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img alt="" border="0" height="320" src="https://wol-prod-cdn.literatumonline.com/cms/attachment/55763168-7f87-4685-9ee4-ef74767bc9d9/bioe.2018.32.issue-3.cover.jpg" title="cover Image of " width="256" /></a>Exciting changes are coming to <a href="https://onlinelibrary.wiley.com/loi/14678519"><i>Bioethics</i></a>. Our publisher has, essentially, removed the page limitations on our budget. That provides us, of course, with growth opportunities. We have decided, informally, to begin reviewing papers that are primarily empirical in nature and/or that are primarily legal analyses. In the past we rejected such manuscripts, typically, as desk-rejects (ie the decision was made by us Editors without further review). We will now be able to accommodate such manuscripts, provided they have significant implications for bioethics. To facilitate the competent review of such submissions we have secured in-principle agreement from two colleagues in our field, who are in the process of being appointed as Associate Editors to the journal's Editorial Board. Once that paperwork between them and the publisher is sorted out, we will formally announce who is joining the team at the journal. At that point in time our informal current arrangement will become our formal new policy. </div>
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<br />udo schuklenkhttp://www.blogger.com/profile/16463788271983027260noreply@blogger.comtag:blogger.com,1999:blog-21709705.post-65229273218663586392018-01-29T11:41:00.001-05:002018-01-29T11:41:25.616-05:00VW, Mercedes, BMW and those experiments<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKVNxlTBYyC4iQ-LvF95cwm0Qc6IA96Vfw8dCu4EKx9l_bXg0tdFUqkEthVRlFhk4Q87B-eMpeXlWUPVNPJEPvwBu-fthPi2ifPOcJHDwn7tKLGhkp9jZDbgDHJKquUJjYDRUO/s1600/image-1218994-860_poster_16x9-huwa-1218994.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="484" data-original-width="860" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKVNxlTBYyC4iQ-LvF95cwm0Qc6IA96Vfw8dCu4EKx9l_bXg0tdFUqkEthVRlFhk4Q87B-eMpeXlWUPVNPJEPvwBu-fthPi2ifPOcJHDwn7tKLGhkp9jZDbgDHJKquUJjYDRUO/s400/image-1218994-860_poster_16x9-huwa-1218994.jpg" width="400" /></a></div>
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So, the three largest German car manufacturers are for obvious and for good reasons targets of everyone's scorn these days. VW in particular is known to have manipulated its diesel engine equipped cars so that when they were tested the engines were relatively clean as far as their nitrogen oxide pollution is concerned. Once on the road these cars actually generated more pollution than many trucks. In 2012 <a href="http://www.europarl.europa.eu/sides/getDoc.do?type=REPORT&mode=XML&reference=A8-2017-0049&language=EN#title2">reportedly</a> over 72 000 Europeans died prematurely because of nitrogen oxide pollution caused by these cars. No argument there.</div>
<br />
VW, BMW and Mercedes (Daimler) set up a research outfit designed to investigate the impact of this pollution on humans and the environment. As is the case with these sorts of agitprop outlets, they have an impressive name. The European Research Group on Environment and Health in the Transport Sector it was. The cigarette manufacturing industry had a similar research institute, its aim was, of course, to show that cigarettes have not been shown to cause cancer, and to produce citable evidence (ideally published in scientific leading journals) for the industry's lobbyists.<br />
<br />
As is usually the case, there was a whole gaggle of university professors more than willing to lend their names to that enterprise, and so were prestigious research institutes, attached to universities. They accepted contracts from the German car industry research outfit. Among their research were two kinds of trials that are widely condemned today, albeit for reasons that are not quite obvious, at least not when it comes to the trial involving human participants. <br />
<br />
The first kind of trial include 10 monkeys. They were put in an airtight room where they watched cartoons. Meanwhile exhausts from a manipulated VW Beetle with a diesel engine were pumped into the room. That was then compared against the missions of a 1999 Ford engine. The finding propagated at the time by the industry research outfit: Diesel engine exhausts, even in high concentrations, do not cause lasting damage to monkeys.<br />
<br />
The main criticism mounted against this research (apart from the obvious question whether it is ethical to subject monkeys to that kind of research in the first place - a very reasonable criticism that I think is persuasive) seems to be that we knew already that these exhausts are dangerous, so the companies should have better focused on reducing emissions rather than on trying to show that they're not a health risk.<br />
<br />
In any case, the research was based on a fraudulent set-up, the monkeys were subjected to nitrogen oxide concentrations far below what VW diesel engines emitted at the time in the real world. It is unlikely that the researchers who were contracted to undertake this research were aware of the manipulation. The research was undertaken at the Lovelace Respiratory Research Institute in the United States.<br />
<br />
The main criticism here should be that highly evolved non-human animals were utilised for research purposes that were not even research purposes. The health impact of a 1999 Ford exhaust was compared against that of a non-existent (aka manipulated) 2012 VW diesel engine. These monkeys were subjected to the risk of bodily harm for no scientific reason at all.<br />
<br />
Well, it does not end there. The European Research Group on Environment and Health in the Transport Sector <a href="http://docs.dpaq.de/13191-brand_no2_2016.pdf">commissioned another experiment</a>, this time involving 25 or so health volunteers at a German university hospital. The study received ethics approval, no VW diesel engine was thankfully involved on this occasion, manipulated or otherwise. The researchers aimed to determine what the health implications of different levels of nitrogen oxide concentrations in the workplace environment/air would be on those trial participants. The trial participants were subjected to those nitrogen oxide concentrations for 3 hours. The study concluded that there were no significant health implications. However, the authors of this study were also quite explicit about the limitations of their findings. Their summary contains a longish list of caveats, including the warning that a 3 hour test tells us nothing about the effects of chronic exposure (ie the real world). <br />
<br />
This study received the required ethics approval, the trial participants were healthy volunteers who gave first person informed consent to trial participation. It is unclear to me here why German politicians and board members of VW, BMW and Mercedes<a href="http://www.spiegel.de/wirtschaft/unternehmen/volkswagen-daimler-bmw-und-bosch-offenbar-auch-abgastests-an-menschen-a-1190251.html"> are falling over one another</a> to condemn this research. It seems to me that no fraud was committed, and the question seems scientifically sound.<br />
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<br />udo schuklenkhttp://www.blogger.com/profile/16463788271983027260noreply@blogger.comtag:blogger.com,1999:blog-21709705.post-66478612128011295882018-01-21T18:08:00.001-05:002018-01-21T18:08:48.383-05:00The trouble with Public Health: HIV/AIDS in Canada as a case in point<section class="article-section article-body-section" id="bioe12429-sec-0001" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(51, 51, 51); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(51, 51, 51); border-left-style: none; border-left-width: 0px; border-right-color: rgb(51, 51, 51); border-right-style: none; border-right-width: 0px; border-top-color: rgb(51, 51, 51); border-top-style: none; border-top-width: 0px; clear: left; color: #333333; display: block; font-family: &quot; font-size: 10px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; margin-bottom: 10px; margin-left: 55px; margin-right: 55px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; overflow: hidden; padding-bottom: 5px; padding-left: 0px; padding-right: 0px; padding-top: 0px; position: relative; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px; z-index: 1;"><div style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(51, 51, 51); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(51, 51, 51); border-left-style: none; border-left-width: 0px; border-right-color: rgb(51, 51, 51); border-right-style: none; border-right-width: 0px; border-top-color: rgb(51, 51, 51); border-top-style: none; border-top-width: 0px; font-size: 16px; line-height: 24px; margin-bottom: 14.88px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
<a href="http://onlinelibrary.wiley.com/doi/10.1111/bioe.12429/full">Here's my latest Editorial from<i> </i>the February issue of <i>Bioethics</i></a></div>
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It has been known among HIV/AIDS specialists for many years that infected people are for all practical intent and purposes unable to transmit the virus on to their sex partners, provided they consistently take anti-HIV medicines that render the amount of the virus in their bloodstream undetectable. Common sense would have suggested that Public Health authorities should have acted on this knowledge and ensured that it is deployed in such a way that it contributes toward the maximisation of desirable public health objectives, in this case, obviously the reduction in number of new infections. Public Health agencies should have revamped existing policies demanding that infected people disclose their HIV status to their sex partners to no disclosure required where ‘your viral load is undetectable for 12 months’ or some such figure. This would have dramatically increased the attractiveness of getting tested, of getting infected people discovered in a more timely fashion, getting them treated in a more timely fashion, and ultimately getting their viral load to undetectable in a more timely fashion. The predictable result of this policy change: A significant reduction in new HIV infections. Common sense and Public Health are sadly all too often residing in different realities.</div>
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Nothing of this sort occurred during the last few years. HIV infected people with undetectable viral loads were prosecuted for not disclosing their status. Public Health agencies, when given a chance, would disclose their HIV status to their sex partners. The contact tracing Public Health surveillance machine remained in overdrive in countries such as Canada. About 200 carriers of the virus were prosecuted over the years in that country alone. None of this served the public health objective just outlined, and none of this was evidence driven. Rather, it was driven by views on HIV/AIDS that may have had a place in the 1980s to early 1990s when AIDS was considered as a serious public health concern. Today, with negligibly low new infections rates, it is worth asking why HIV remains high on the agenda of Public Health agencies. HIV is clearly not a public health concern in Canada and most other countries of the global north. My suspicion is that the threat of prosecution serves purposes unrelated to HIV, they serve to control consenting adults’ sexual behaviours.</div>
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Much is made of the fact that an estimated 1:5 Canadians who are infected with the virus are unaware of their infection. What is typically not mentioned by the same Public Health officials is that they have gone out of their way to make it difficult for Canadians who are HIV infected to find out about their infection. Because the contact tracing government Public Health agencies want to know about each infected Canadian, by name and address, they cannot permit people at risk to test themselves with tests they can conveniently buy down south in the United States in every pharmacy. Unsurprisingly, a different government agency, the drug approval regulator Health Canada, has swung into action and threatened people with prosecution who import and resell reliable, US FDA approved, HIV self-tests into Canada, lest they would find out whether they are infected and Public Health not having their names and addresses on their records. You might not be surprised to learn that while STI testing and treatment is ostensibly free and anonymous at the country's Public Health agencies, in reality patients must show their provincial health insurance cards or else they are out of luck if they carry an STI but fail to provide the said card. The UK's NHS unsurprisingly manages public health in a manner somewhat more focused on infection control than administration.</div>
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It is no surprise then that in a country where government surveillance has been prioritised over and at the same time conflated with public health, people at risk of HIV infections remain reluctant to get tested. They have no reason to trust Public Health to act in a timely fashion in response to evidence.</div>
<div style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(51, 51, 51); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(51, 51, 51); border-left-style: none; border-left-width: 0px; border-right-color: rgb(51, 51, 51); border-right-style: none; border-right-width: 0px; border-top-color: rgb(51, 51, 51); border-top-style: none; border-top-width: 0px; font-size: 16px; line-height: 24px; margin-bottom: 14.88px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
In late 2017, Canada's federal government noticed after much studying what has been known for years about HIV transmission risk and undetectable viral loads. Both federal and provincial justice ministers appear to be finally acting in response to the existing evidence. Prosecutions of HIV infected people with undetectable viral loads who do not disclose their status to their sex partners are likely to be a thing of the past in that country.<a class="js-link__note link__note" href="http://onlinelibrary.wiley.com/doi/10.1111/bioe.12429/full#bioe12429-note-0001" rel="references:#bioe12429-note-0001" style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; color: #2f7bae; cursor: pointer; font-size: 10.86px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; position: relative; text-decoration: none; top: -6.84px; vertical-align: baseline; word-wrap: break-word;" title="Link to note">1</a></div>
<div style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(51, 51, 51); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(51, 51, 51); border-left-style: none; border-left-width: 0px; border-right-color: rgb(51, 51, 51); border-right-style: none; border-right-width: 0px; border-top-color: rgb(51, 51, 51); border-top-style: none; border-top-width: 0px; font-size: 16px; line-height: 24px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
The main lesson I am suggesting we take away from this episode of HIV/AIDS prevention in Canada is to ask that Public Health agencies' policies should be held to public health outcomes, otherwise they serve no purpose. The cavalier approach to civil liberties taken not only by Canada's Public Health agencies, one that was not evidence based for many years, must be replaced by a policy approach based transparently on the latest scientific evidence. A golden rule in most public health ethics documents is that limitations on civil rights (in this case ownership of one's confidential health information) must be justified by significant benefits in public health outcomes, i.e., the public interest. HIV disclosure policies executed by Public Health agencies have failed this test for a very long time. Public Health agencies in Canada in particular have lost trust and support among people at risk of HIV infection because they lost sight of public health outcomes while focusing on Public Health administration and control. A paradigmatic case of how not to implement efficient infection control policies.</div>
</section><section class="article-section article-section__notes js-module" data-module="notes" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(51, 51, 51); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(51, 51, 51); border-left-style: none; border-left-width: 0px; border-right-color: rgb(51, 51, 51); border-right-style: none; border-right-width: 0px; border-top-color: rgb(51, 51, 51); border-top-style: none; border-top-width: 0px; clear: left; color: #333333; display: block; font-family: &quot; font-size: 10px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; margin-bottom: 10px; margin-left: 55px; margin-right: 55px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; overflow: hidden; padding-bottom: 5px; padding-left: 0px; padding-right: 0px; padding-top: 0px; position: relative; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px; z-index: 1;"><h3 style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-size: 19px; font-weight: 400; line-height: 26.6px; margin-bottom: 14.82px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
Footnote</h3>
<ol class="article-section__notes-list u-list-plain" id="notes" style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(51, 51, 51); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(51, 51, 51); border-left-style: none; border-left-width: 0px; border-right-color: rgb(51, 51, 51); border-right-style: none; border-right-width: 0px; border-top-color: rgb(51, 51, 51); border-top-style: none; border-top-width: 0px; font-size: 10px; list-style-image: none; list-style-position: outside; list-style-type: none; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
<li id="bioe12429-note-0001" style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(51, 51, 51); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(51, 51, 51); border-left-style: none; border-left-width: 0px; border-right-color: rgb(51, 51, 51); border-right-style: none; border-right-width: 0px; border-top-color: rgb(51, 51, 51); border-top-style: none; border-top-width: 0px; font-size: 14px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 42px; padding-right: 0px; padding-top: 0px; position: relative; vertical-align: baseline;"><span class="bullet" style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(51, 51, 51); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(51, 51, 51); border-left-style: none; border-left-width: 0px; border-right-color: rgb(51, 51, 51); border-right-style: none; border-right-width: 0px; border-top-color: rgb(51, 51, 51); border-top-style: none; border-top-width: 0px; font-size: 14px; left: 0px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; position: absolute; vertical-align: baseline; width: 42px;">1</span><div style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(51, 51, 51); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(51, 51, 51); border-left-style: none; border-left-width: 0px; border-right-color: rgb(51, 51, 51); border-right-style: none; border-right-width: 0px; border-top-color: rgb(51, 51, 51); border-top-style: none; border-top-width: 0px; font-size: 14px; line-height: 21px; margin-bottom: 13.02px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
<cite id="bioe12429-cit-0001" style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(51, 51, 51); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(51, 51, 51); border-left-style: none; border-left-width: 0px; border-right-color: rgb(51, 51, 51); border-right-style: none; border-right-width: 0px; border-top-color: rgb(51, 51, 51); border-top-style: none; border-top-width: 0px; font-size: 14px; font-style: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">Harris, K. (2017, December 1). Liberals want to limit prosecutions of people who do not reveal status to sex partners. <em style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(51, 51, 51); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(51, 51, 51); border-left-style: none; border-left-width: 0px; border-right-color: rgb(51, 51, 51); border-right-style: none; border-right-width: 0px; border-top-color: rgb(51, 51, 51); border-top-style: none; border-top-width: 0px; font-size: 14px; font-style: italic; margin-bottom: 0px; margin-left: 3px; margin-right: 3px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">CBC NEWS</em>. Retrieved from <a href="http://www.cbc.ca/news/politics/liberals-hiv-criminalization-1.4428395" style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; color: #2f7bae; cursor: pointer; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-decoration: none; vertical-align: baseline; word-wrap: break-word;" target="_blank" title="Link to external resource: http://www.cbc.ca/news/politics/liberals-hiv-criminalization-1.4428395">http://www.cbc.ca/news/politics/liberals-hiv-criminalization-1.4428395</a> </cite></div>
</li>
</ol>
</section><b></b><i></i><u></u><sub></sub><sup></sup><strike></strike><br />udo schuklenkhttp://www.blogger.com/profile/16463788271983027260noreply@blogger.comtag:blogger.com,1999:blog-21709705.post-50613785287969137902018-01-15T14:11:00.000-05:002018-01-15T14:11:53.518-05:00How can we ensure that the global south benefits from and contributes to the field of bioethics?
<br />
<div style="margin: 0px 0px 10.66px;">
<span style="font-family: calibri;"><br /></span></div>
<span style="font-family: calibri;">There has been a legitimate debate going on for many years
about the question of how we can ensure that colleagues in the global south can
both benefit from bioethics journals such as this, as well as contribute constructively
to them. </span><br />
<span style="font-family: calibri;"><br /></span>
<br />
<div style="margin: 0px 0px 10.66px;">
<span style="font-family: calibri;">The issue of access to subscription- based journals has been
litigated ad nauseam and I do think global publishers have done by and large a
decent job in terms of implementing with WHO and other agencies myriad access
themes available to those countries too resource- constrained to afford regular
subscriptions.</span><a href="file:///C:/Users/udito/Downloads/EDITORIALHow%20can%20we%20ensure%20that%20the%20global%20south%20benefits%20and%20contributes%20to%20the%20field%20of%20bioethics.docx" name="_ftnref1" style="mso-footnote-id: ftn1;" title=""><span style="margin: 0px;"><span style="margin: 0px;"><span style="margin: 0px;"><span style="font-family: "Calibri",sans-serif; font-size: 11pt; line-height: 107%; margin: 0px;"><span style="color: #0563c1;">[1]</span></span></span></span></span></a><span style="font-family: calibri;"> </span></div>
<br />
<div style="margin: 0px 0px 10.66px;">
<span style="font-family: calibri;">Some authors disagree, insisting that only Open Access
journals, a supposedly superior business model, can address the access problem
adequately. And they are right, Open Access journals, by definition, pose no
access problems of the kind subscription- based journals pose. Sadly, having
your cake and eating it too rarely works in the real world, and so these
authors, having resolved the access to academic research problem, are faced
with a different problem they did not have before. Open Access journals can
only survive as viable enterprises if a sufficiently high number of authors pay
what are often expensive article processing charges, or APCs. These journals
often offer their equivalent to the access schemes subscription- based journals
have put in place, namely differential fees or fee waivers for those who
absolutely cannot afford to pay. </span></div>
<br />
<div style="margin: 0px 0px 10.66px;">
<span style="font-family: calibri;">Short of asking academics to exploit themselves by
volunteering to produce and disseminate academic journals and their content,
reliably, over decades, <i style="mso-bidi-font-style: normal;">someone</i> will
have to pay for the resource intensive production of journals and to ensure the
reliable availability of their content. </span></div>
<br />
<div style="margin: 0px 0px 10.66px;">
<span style="font-family: calibri;">I have yet to see from those complaining about access
problems <i style="mso-bidi-font-style: normal;">realistic</i> solutions to this
challenge. They mostly, and typically correctly identify the problem, but
beyond grandstanding they offer no answers. They expect <i style="mso-bidi-font-style: normal;">someone</i> else to sort things out for them.</span></div>
<br />
<div style="margin: 0px 0px 10.66px;">
<span style="font-family: calibri;">As I said, authors in the global south can access bioethics journal content either by means of the access schemes mentioned earlier, or by simply
emailing the authors of content they are interested in and by asking those
authors for a complimentary electronic copy of their article. Nobody would
decline such a request. </span></div>
<br />
<div style="margin: 0px 0px 10.66px;">
<span style="font-family: calibri;">I do think that a much greater challenge is to enable
scholars from the global south to participate in international conferences and
workshops both to share their own knowledge, but also to learn from colleagues
and to network with a view to establishing research partnerships and the like. </span></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqSQ-ItZshUMX_YCw4DtPMGM0cfGXtnnDCGBifpmoHPfrtdLI5qhcJ5jUiqj2NZckjU7q2kdw9hnLvSxnb5GVQ2jOlnl4zcb-J8NiFdn2wIivZ4n7UKSc77WvO1km-Yai0SYFF/s1600/herstmonceux-castle-east-sussex-roman-grac.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="599" data-original-width="900" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqSQ-ItZshUMX_YCw4DtPMGM0cfGXtnnDCGBifpmoHPfrtdLI5qhcJ5jUiqj2NZckjU7q2kdw9hnLvSxnb5GVQ2jOlnl4zcb-J8NiFdn2wIivZ4n7UKSc77WvO1km-Yai0SYFF/s320/herstmonceux-castle-east-sussex-roman-grac.jpg" width="320" /></a></div>
<div style="margin: 0px 0px 10.66px;">
<span style="font-family: calibri;">I suspect you will know Facebook. I posted a photo from a
workshop I had organised in the summer of 2017 in the UK, on the most recent
version of the Council for International Organizations of Medical Sciences <span style="margin: 0px;"> </span>(CIOMS) research ethics guidelines. Not
unexpectedly a colleague, located in an upmarket London- based university,
harangued me for the lack of diversity, perhaps most significantly, the evident
lack of attendees from the global south. That colleague was right: only two of
the 25 or so workshop delegates came from the Caribbean, while everyone else
came from countries of the global north. Of course, I had virtually no funding
to organise said workshop, and everyone who travelled there paid their own way.
Nobody’s flight was covered by me. I did have inquiries from various colleagues
in the global south who would have loved to attend, but quickly gave up on the
idea due to lack of funds for their travel expenses. The colleague who criticized
me quite publicly, naturally, had no funds to offer either. It is always easier
to criticize than to contribute meaningfully to change. The same, as I tried to
show, holds true for academics who refuse to acknowledge the cost involved in
producing academic journals. </span></div>
<br />
<div style="margin: 0px 0px 10.66px;">
<span style="font-family: calibri;">Some constructive attempts have been made to have a more
globally representative group of conference goers presenting at and attending international
bioethics events. A successful example of this is the Global Forum on Bioethics
and Research. The GFBR has been around for a longish time. It’s funded mostly
by the UK’s Wellcome Trust, the Gates Foundation, the US NIH Fogarty
International Center and the UK’s Medical Research Council. I had a quick look
at the GFBR’s website, with a view to finding out who governs it, and who
decides on the composition of speakers and attendees of its meetings, given
that its funders reside essentially in the USA and the UK. It seems to me as if
the majority of those people are either staff members of these funding
organisations, or are past/current grant recipients.</span><a href="file:///C:/Users/udito/Downloads/EDITORIALHow%20can%20we%20ensure%20that%20the%20global%20south%20benefits%20and%20contributes%20to%20the%20field%20of%20bioethics.docx" name="_ftnref2" style="mso-footnote-id: ftn2;" title=""><span style="margin: 0px;"><span style="margin: 0px;"><span style="margin: 0px;"><span style="font-family: "Calibri",sans-serif; font-size: 11pt; line-height: 107%; margin: 0px;"><span style="color: #0563c1;">[2]</span></span></span></span></span></a><span style="font-family: calibri;">
There appear to be very few truly independent scholars from the global south
among those in charge of <i style="mso-bidi-font-style: normal;">organising</i> these
global events. </span></div>
<br />
<div style="margin: 0px 0px 10.66px;">
<span style="font-family: calibri;">I don’t think that this is the result of any kind of
malicious intent. It’s likely a function of ‘who do we know who could serve on
that steering committee who is from Africa, Asia etc’, and who does one know?
Well, the answer is likely to be: ‘someone we have funded before’. </span></div>
<br />
<div style="margin: 0px 0px 10.66px;">
<span style="font-family: calibri;">However, that alone does not address the question of whether
or not the meetings are failures when it comes to the question of participants
from the global south. Here are the criteria the GBFR uses to determine who
among the applicants will be invited</span><a href="file:///C:/Users/udito/Downloads/EDITORIALHow%20can%20we%20ensure%20that%20the%20global%20south%20benefits%20and%20contributes%20to%20the%20field%20of%20bioethics.docx" name="_ftnref3" style="mso-footnote-id: ftn3;" title=""><span style="margin: 0px;"><span style="margin: 0px;"><span style="margin: 0px;"><span style="font-family: "Calibri",sans-serif; font-size: 11pt; line-height: 107%; margin: 0px;"><span style="color: #0563c1;">[3]</span></span></span></span></span></a><span style="font-family: calibri;">:</span></div>
<br />
<div style="background: white; line-height: 13.5pt; margin: 0px 0px 0px 20px; text-indent: -18pt; vertical-align: baseline;">
<span style="font-family: Symbol; font-size: 10pt; margin: 0px;"><span style="margin: 0px;">·<span style="font-size-adjust: none; font-stretch: normal; font: 7pt "Times New Roman"; margin: 0px;">
</span></span></span><span style="font-family: calibri;"><i><span style="border-image: none; border: 1pt windowtext; margin: 0px; padding: 0cm;">Country
of origin:</span></i><span style="margin: 0px;"> GFBR would like to ensure a representative distribution of
delegates from different regions;</span></span></div>
<br />
<div style="background: white; line-height: 13.5pt; margin: 0px 0px 0px 20px; text-indent: -18pt; vertical-align: baseline;">
<span style="font-family: Symbol; font-size: 10pt; margin: 0px;"><span style="margin: 0px;">·<span style="font-size-adjust: none; font-stretch: normal; font: 7pt "Times New Roman"; margin: 0px;">
</span></span></span><span style="font-family: calibri;"><i><span style="border-image: none; border: 1pt windowtext; margin: 0px; padding: 0cm;">Background
/current area of expertise:</span></i><span style="margin: 0px;"> GFBR is aimed at anyone involved or
interested in health research ethics, including researchers, policy-makers and
community representatives. GFBR seeks representation from many different
disciplines;</span></span></div>
<br />
<div style="background: white; line-height: 13.5pt; margin: 0px 0px 0px 20px; text-indent: -18pt; vertical-align: baseline;">
<span style="font-family: Symbol; font-size: 10pt; margin: 0px;"><span style="margin: 0px;">·<span style="font-size-adjust: none; font-stretch: normal; font: 7pt "Times New Roman"; margin: 0px;">
</span></span></span><span style="font-family: calibri;"><i><span style="border-image: none; border: 1pt windowtext; margin: 0px; padding: 0cm;">Membership
of an IRB/REC:</span></i><span style="margin: 0px;"> Membership of an Institutional Review Board / Research Ethics
Committee is not a prerequisite for attending GFBR, but may be taken into
consideration;</span></span></div>
<br />
<div style="background: white; line-height: 13.5pt; margin: 0px 0px 0px 20px; text-indent: -18pt; vertical-align: baseline;">
<span style="font-family: Symbol; font-size: 10pt; margin: 0px;"><span style="margin: 0px;">·<span style="font-size-adjust: none; font-stretch: normal; font: 7pt "Times New Roman"; margin: 0px;">
</span></span></span><span style="font-family: calibri;"><i><span style="border-image: none; border: 1pt windowtext; margin: 0px; padding: 0cm;">Experience
of ethics:</span></i><span style="margin: 0px;"> GFBR encourage s a mixture of ‘old’ and ‘new’ faces at each forum
so that participants can productively discuss issues of concern to them and
gain from the perspectives of others. Applicants need not be experts in ethics;</span></span></div>
<br />
<div style="background: white; line-height: 13.5pt; margin: 0px 0px 0px 20px; text-indent: -18pt; vertical-align: baseline;">
<span style="font-family: Symbol; font-size: 10pt; margin: 0px;"><span style="margin: 0px;">·<span style="font-size-adjust: none; font-stretch: normal; font: 7pt "Times New Roman"; margin: 0px;">
</span></span></span><span style="font-family: calibri;"><i><span style="border-image: none; border: 1pt windowtext; margin: 0px; padding: 0cm;">Reasons
for attending the meeting:</span></i><span style="margin: 0px;"> GFBR seeks participants who will be able to actively contribute to
the meeting and who expect to impact on research ethics and/or pursue a career
in research ethics in their own country.</span></span></div>
<br />
<div style="background: white; line-height: 13.5pt; margin: 0px; vertical-align: baseline;">
<br /></div>
<br />
<div style="background: white; line-height: 13.5pt; margin: 0px; vertical-align: baseline;">
<span style="margin: 0px;"><span style="font-family: calibri;">While there is the inevitable number of people who
presumably just have to be at every such meeting (let’s call them ‘old’ faces),
the GFBR has succeeded in terms of attracting a fairly wide range of delegates
from the global south to its meetings over the last few years.<span style="margin: 0px;"> </span>It’s a small (and expensive) meeting,
designed to host about 80 delegates, but it’s probably a meeting as good as
they come on the global bioethics scene. I truly wish there were more such
events on the global bioethics events’ calendar.</span></span></div>
<br />
<div style="background: white; line-height: 13.5pt; margin: 0px; vertical-align: baseline;">
<br /></div>
<br />
<div style="background: white; line-height: 13.5pt; margin: 0px; vertical-align: baseline;">
<span style="margin: 0px;"><span style="font-family: calibri;">It is fortuitous that the next World Congress of the International Association of Bioethics will be held in New Delhi from 4-7 December 2018 under the theme <i style="mso-bidi-font-style: normal;">Health for all in an unequal world:
obligations of global bioethics</i> and is locally hosted by SAMA, the resource
group for women’s health, the Forum for Medical Ethics Society, and, of course,
the IAB.</span><a href="file:///C:/Users/udito/Downloads/EDITORIALHow%20can%20we%20ensure%20that%20the%20global%20south%20benefits%20and%20contributes%20to%20the%20field%20of%20bioethics.docx" name="_ftnref4" style="mso-footnote-id: ftn4;" title=""><span style="margin: 0px;"><span style="margin: 0px;"><span style="margin: 0px;"><span style="font-family: "Calibri",sans-serif; font-size: 11pt; line-height: 107%; margin: 0px;"><span style="color: #0563c1;">[4]</span></span></span></span></span></a><span style="font-family: calibri;">
With a bit of luck (and planning) there might be a plenary dedicated to
figuring out how to enable more delegates from the global south to attend such
events. Why don’t you propose to organise such a plenary to the India- based
hosts of the event. They might consider it quite seriously.</span></span></div>
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<a href="file:///C:/Users/udito/Downloads/EDITORIALHow%20can%20we%20ensure%20that%20the%20global%20south%20benefits%20and%20contributes%20to%20the%20field%20of%20bioethics.docx" name="_ftn1" style="mso-footnote-id: ftn1;" title=""><span style="margin: 0px;"><span style="margin: 0px;"><span style="margin: 0px;"><span style="font-family: "Calibri",sans-serif; font-size: 11pt; line-height: 107%; margin: 0px;"><span style="color: #0563c1;">[1]</span></span></span></span></span></a><span style="font-family: calibri;"><span style="margin: 0px;">Schuklenk
U. 2015. Fighting Imaginary Enemies in Bioethics Publishing. <i style="mso-bidi-font-style: normal;">Bioethics</i> <b style="mso-bidi-font-weight: normal;">29(8)</b>: ii-iii. Schuklenk U, Magnus D. 2017. Justice and Bioethics:
Who Should Finance Bioethics Publishing? <i style="mso-bidi-font-style: normal;">AJOB</i>
<b style="mso-bidi-font-weight: normal;">17(10)</b>: 1-2.</span> </span></div>
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[Accessed 28 November 2017].</span></div>
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2017]</span></div>
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<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike>udo schuklenkhttp://www.blogger.com/profile/16463788271983027260noreply@blogger.comtag:blogger.com,1999:blog-21709705.post-17107830550780708812017-07-25T14:58:00.000-04:002017-07-25T14:59:23.689-04:002017 Bioethics journals h5 / h5-median index<span style="color: #333333; font-family: "arial";"> I suspect I could have had this easier, but be that as it may, I searched for bioethics/health care ethics/ medical ethics journals on google scholar to see how they fare in terms of citations over the last five years. </span><br />
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<span style="background-color: white; color: #333333; font-family: "arial" , "tahoma" , "helvetica" , "freesans" , sans-serif; font-size: 14.8500003814697px; line-height: 16.6319999694824px;">Quite possibly the below table will be displayed in odd ways on your screen. </span><br />
<br style="background-color: white; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.8500003814697px; line-height: 16.6319999694824px;" />
<span style="background-color: white; color: #333333; font-family: "arial" , "tahoma" , "helvetica" , "freesans" , sans-serif; font-size: 14.8500003814697px; line-height: 16.6319999694824px;">Usual CoI blurb applies. I co-edit two of the journals in this list. List up-dated July 2017. Any mistakes are my own, please alert me if you discover discrepancies between what I am reporting and what you're able to find on google scholar. </span></div>
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<span style="background: silver; color: #222222; font-size: 10pt;"><span style="background-color: white; color: #333333; font-family: "arial" , "tahoma" , "helvetica" , "freesans" , sans-serif; font-size: 14.85px; line-height: 16.632px;"><span style="font-size: x-small;"><br class="Apple-interchange-newline" /></span></span></span> <b>h5 h5-median</b></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Nursing Ethics 34 44 </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">Journal of Medical Ethics 31 42 </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">The American Journal of Bioethics </span><a href="https://scholar.google.co.uk/citations?hl=en&vq=med_bioethics&view_op=list_hcore&venue=UdF6opZRFacJ.2015"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; text-decoration: none;">28</span></a><span style="font-family: "arial" , "helvetica" , sans-serif;"> 37</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Journal of Law, Medicine and Ethics 27 40</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Science and Engineering Ethics</span> <span style="font-family: "arial" , "helvetica" , sans-serif;"> 30 45</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Bioethics 25 31</span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;"> </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Neuroethics 23 36</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">bmc medical ethics 23 32</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">Medicine, Health Care and Philosophy 20 25 </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">Hastings Center Report 19 32 </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">American Journal of Bioethics Neuroscience 18 28</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Journal of Medicine and Philosophy </span><a href="https://scholar.google.co.uk/citations?hl=en&vq=med_bioethics&view_op=list_hcore&venue=pqVFYKdK69YJ.2015"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; text-decoration: none;">18</span></a><span style="font-family: "arial" , "helvetica" , sans-serif;"> 22 </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Journal of Empirical Research on Human Research Ethics </span><a href="https://scholar.google.co.uk/citations?hl=en&vq=med_bioethics&view_op=list_hcore&venue=vhkAs2K91KgJ.2015"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; text-decoration: none;">1</span></a><span style="font-family: "arial" , "helvetica" , sans-serif;">7 20</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Health Care Analysis 16 22</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Nursing Philosophy 15 29</span></div>
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<span style="background: white; color: #222222; font-size: 10.0pt;"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; font-size: small;">Developing World Bioethics </span><a href="https://scholar.google.co.uk/citations?hl=en&vq=med_bioethics&view_op=list_hcore&venue=ksUoo95MlnMJ.2015"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; font-size: small; text-decoration: none;">1</span></a><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; font-size: small;">5 28 </span></span></div>
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<span style="background: white; color: #222222; font-size: 10.0pt;"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; font-size: small;">Journal of Bioethical Inquiry </span><a href="https://scholar.google.co.uk/citations?hl=en&vq=med_bioethics&view_op=list_hcore&venue=2PTaW0VPz2IJ.2015"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; font-size: small; text-decoration: none;">1</span></a><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; font-size: small;">5 16</span></span></div>
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<span style="background: white; color: #222222; font-size: 10.0pt;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: small;">Theoretical Medicine and Bioethics </span><a href="https://scholar.google.co.uk/citations?hl=en&vq=med_bioethics&view_op=list_hcore&venue=Xh9WbfbuS9kJ.2015"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; font-size: small; text-decoration: none;">1</span></a><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: small;">4 18</span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: small;">Public Health Ethics </span><a href="https://scholar.google.co.uk/citations?hl=en&vq=med_bioethics&view_op=list_hcore&venue=XaniIuAs-CQJ.2015"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; font-size: small; text-decoration: none;">13</span></a><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: small;"> 22 </span></div>
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</span><span style="background: white; color: #222222; font-size: 10.0pt;"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; font-size: small;">Cambridge Quarterly of Healthcare Ethics </span><a href="https://scholar.google.co.uk/citations?hl=en&vq=med_bioethics&view_op=list_hcore&venue=5NBxhBJ1zY4J.2015"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; font-size: small; text-decoration: none;">1</span></a><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; font-size: small;">3 18</span></span></div>
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<span style="background-color: white;"><span style="font-family: "arial" , "helvetica" , sans-serif;">HEC Forum </span><a href="https://scholar.google.co.uk/citations?hl=en&vq=med_bioethics&view_op=list_hcore&venue=jabbVGy0Lm8J.2015"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; text-decoration: none;">12</span></a><span style="font-family: "arial" , "helvetica" , sans-serif;"> 28</span></span></div>
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<span style="background-color: white; font-family: "arial" , "helvetica" , sans-serif;">Kennedy Institute of Ethics Journal 12 19</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Perspectives in Biology and Medicine</span> <span style="font-family: "arial" , "helvetica" , sans-serif;">12 15</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">NanoEthics </span><a href="https://scholar.google.co.uk/citations?hl=en&vq=med_bioethics&view_op=list_hcore&venue=i8Dv-pVu4hMJ.2015"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; text-decoration: none;">1</span></a><span style="font-family: "arial" , "helvetica" , sans-serif;">2 16 </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">The Journal of Clinical Ethics </span><a href="https://scholar.google.co.uk/citations?hl=en&vq=med_bioethics&view_op=list_hcore&venue=fiJO18YSuVcJ.2015"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; text-decoration: none;">12</span></a><span style="font-family: "arial" , "helvetica" , sans-serif;"> 16</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Indian Journal of Medical Ethics </span><a href="https://scholar.google.co.uk/citations?hl=en&vq=med_bioethics&view_op=list_hcore&venue=OCAxMz-h3iUJ.2015"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; text-decoration: none;">1</span></a><span style="font-family: "arial" , "helvetica" , sans-serif;">1 18</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">American Journal of Bioethics Primary Research </span><a href="https://scholar.google.co.uk/citations?hl=en&vq=med_bioethics&view_op=list_hcore&venue=JjUD0EI9Z8sJ.2015"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; text-decoration: none;">11</span></a><span style="font-family: "arial" , "helvetica" , sans-serif;"> 15</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">Journal of Medical Ethics and History of Medicine 9 17</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Narrative Inquiry in Bioethics</span> <span style="font-family: Arial, Helvetica, sans-serif;">8 13</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">International Journal of Feminist Approaches to Bioethics </span><a href="https://scholar.google.co.uk/citations?hl=en&vq=med_bioethics&view_op=list_hcore&venue=-pBPGkt41DAJ.2015"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif; text-decoration: none;">8</span></a><span style="font-family: "arial" , "helvetica" , sans-serif;"> 11</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Ethik in der Medizin 8 10</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">South African Journal of Bioethics and Law</span> <span style="font-family: "arial" , "helvetica" , sans-serif;"> 8 9</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Medical Ethics Journal 7 9</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Yale Journal of Health Policy, Law, and Ethics</span> <span style="font-family: "arial" , "helvetica" , sans-serif;"> 6 12</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Monash Bioethics Review 6 8</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Asian Bioethics Review 5 10</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Christian Bioethics 5 6</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Journal international de bioethique</span> <span style="font-family: "arial" , "helvetica" , sans-serif;"> 4 8</span></div>
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<span style="background-color: white; font-family: "arial" , "helvetica" , sans-serif;">Ethics in Biology, Engineering and Medicine 4 6</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">European Journal of Bioethics 4 4</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">National Catholic Bioethics Quarterly 3 5</span></div>
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*<span style="color: #222222; font-family: "arial" , sans-serif; font-size: 10pt;">h5-index is the h-index for articles published in the last 5 complete years. It is the largest number h such that h articles published in 2012-2016 have at least h citations each</span><o:p></o:p></div>
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<span style="color: #222222; font-family: "arial" , sans-serif; font-size: 10pt;">**h5-median for a publication is the median number of citations for the articles that make up its h5-index</span></div>
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike><br />udo schuklenkhttp://www.blogger.com/profile/16463788271983027260noreply@blogger.comtag:blogger.com,1999:blog-21709705.post-2853146286648848182017-07-06T16:05:00.001-04:002017-07-06T16:07:16.601-04:00Viewpoints: should euthanasia be available for people with existential suffering?Here's a piece<i> </i>I<i> </i>have put together jointly with Xavier Symons for <a href="https://theconversation.com/viewpoints-should-euthanasia-be-available-for-people-with-existential-suffering-79564">The Conversation</a>. <br />
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Euthanasia debates often focus on people experiencing unbearable physiological or psychological suffering. But <a href="http://www.nejm.org/doi/full/10.1056/NEJMms1700606" style="color: #557585; outline: none; text-decoration: underline; white-space: pre-wrap; word-wrap: break-word;">research suggests</a> “loss of autonomy” is the primary reason for requesting euthanasia, even among patients with terminal cancer. <a href="http://jme.bmj.com/content/37/12/727.short" style="color: #557585; outline: none; text-decoration: underline; white-space: pre-wrap; word-wrap: break-word;">There have also been suggestions</a> existential suffering could be one of the main motivations behind such requests.</div>
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Existential suffering refers to an individual experiencing a lack of meaning or sense of purposelessness in life. Such sentiments bring feelings of weariness, numbness, futility, anxiety, hopelessness and loss of control, which may lead a dying patient to express <a href="http://www.sciencedirect.com/science/article/pii/S0272735807001341" style="color: #557585; outline: none; text-decoration: underline; white-space: pre-wrap; word-wrap: break-word;">a desire for death</a>.</div>
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Some <a href="http://jme.bmj.com/content/40/2/104.short" style="color: #557585; outline: none; text-decoration: underline; white-space: pre-wrap; word-wrap: break-word;">bioethicists argue</a> it is inconsistent to allow euthanasia for terminal illness but not for existential suffering, as both are a source of profound pain and distress. While existential suffering usually tracks closely with catastrophic illness, it’s worth considering a situation in which there are no motivating medical reasons for a request for euthanasia or assisted suicide. Should a person be eligible purely on the basis they no longer wish to live?</div>
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<a href="http://www.independent.co.uk/life-style/health-and-families/health-news/gill-pharaoh-healthy-former-nurse-75-takes-own-life-at-assisted-dying-clinic-after-deciding-old-age-10433954.html" style="color: #557585; outline: none; text-decoration: underline; white-space: pre-wrap; word-wrap: break-word;">A case in point</a>: a largely healthy retired palliative care nurse in the UK who ended her life at an assisted suicide clinic in Switzerland. Should she have received medical aid in dying based on her carefully considered decision that she did not want to subject herself to the perceived awfulness of the ageing process?</div>
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The case against</h2>
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<strong style="background: transparent; border: 0px; font-size: 16px; font-weight: bold; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">Xavier Symons, Research Associate, University of Notre Dame Australia</strong></div>
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Some may think people who request euthanasia do so because of excruciating and unremitting pain. The reality is almost always more complex. <a href="https://www.ncbi.nlm.nih.gov/pubmed/19771571" style="color: #557585; outline: none; text-decoration: underline; white-space: pre-wrap; word-wrap: break-word;">Literature</a> on <a href="https://www.mja.com.au/journal/2017/206/8/euthanasia-and-physician-assisted-suicide-focus-data" style="color: #557585; outline: none; text-decoration: underline; white-space: pre-wrap; word-wrap: break-word;">assisted dying</a>suggests individuals who request euthanasia are typically suffering from a profound sense of purposelessness, loss of dignity, loss of control, and a shattered sense of self.</div>
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A 2011 study of Dutch <a href="https://www.ncbi.nlm.nih.gov/pubmed/21947807" style="color: #557585; outline: none; text-decoration: underline; white-space: pre-wrap; word-wrap: break-word;">patients who requested euthanasia</a> indicated that “hopelessness” – the psychological and existential realisation one’s health situation will never improve – was the predominant motivation of patients who requested euthanasia.</div>
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And a recently published Canadian study of <a href="http://www.nejm.org/doi/full/10.1056/NEJMms1700606" style="color: #557585; outline: none; text-decoration: underline; white-space: pre-wrap; word-wrap: break-word;">requests for medical assistance in dying</a> stated “loss of autonomy was the primary reason” motivating patients to end their lives. Symptoms also included “the wish to avoid burdening others or losing dignity and the intolerability of not being able to enjoy one’s life”.</div>
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One option to address such requests is to establish a state apparatus to assist patients in ending their lives. An alternative, and one I would advocate, is to address deficiencies in health care infrastructure, and attempt to alleviate the unique suffering that drives patients to request euthanasia in the first place.</div>
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</a><figcaption style="background: transparent; border: 0px; color: #727272; cursor: default; display: block; font-family: "Helvetica Neue", Helvetica, sans-serif; font-size: 11px; line-height: 18px; margin: 0px; outline: 0px; padding: 6px 0px 0px; vertical-align: baseline;"><span class="caption" style="background: transparent; border: 0px; font-size: 11px; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">Spiritual or existential care can help someone who feels their life has lost meaning.</span> <span class="attribution" style="background: transparent; border: 0px; color: #cccccc; font-size: 11px; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><span class="source" style="background: transparent; border: 0px; font-size: 11px; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">from shutterstock.com</span></span></figcaption></figure><br />
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New approaches to end of life care, such as <a href="https://theconversation.com/spiritual-care-at-the-end-of-life-can-add-purpose-and-help-maintain-identity-55636" style="color: #557585; outline: none; text-decoration: underline; white-space: pre-wrap; word-wrap: break-word;">spiritual or existential care</a>, engage at a deep level with the complexity of the suffering of patients with terminal illness. And, as has been stressed by <a href="http://www.abc.net.au/news/2017-05-26/calls-to-prioritise-palliative-care-before-passing-euthanasia/8561960" style="color: #557585; outline: none; text-decoration: underline; white-space: pre-wrap; word-wrap: break-word;">several</a> <a href="http://www.theaustralian.com.au/opinion/columnists/paul-kelly/legalise-euthanasia-and-compassionate-society-dies-too/news-story/edac86177f0480632d02da83a2225c6d" style="color: #557585; outline: none; text-decoration: underline; white-space: pre-wrap; word-wrap: break-word;">commentators</a>, there is a need to improve access to palliative care in poorer regions, and provide optimal symptom management for patients wishing to die at home.</div>
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We could hypothesise about various situations where a person might request euthanasia without having a medical condition. Someone might wish to hasten their death because they are <a href="http://onlinelibrary.wiley.com/doi/10.1111/j.1467-8519.2007.00535.x/full" style="color: #557585; outline: none; text-decoration: underline; white-space: pre-wrap; word-wrap: break-word;">tired of life</a> or <a href="http://www.bbc.com/news/uk-england-london-33759490" style="color: #557585; outline: none; text-decoration: underline; white-space: pre-wrap; word-wrap: break-word;">afraid of ageing or death</a>.</div>
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These cases are interesting insofar as they are not motivated by an underlying pathology. Yet there is much reason for concern.</div>
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Sanctioning euthanasia for the tired of life veers too close to a government endorsement of suicide. Where the state has a significant stake in suicide prevention, sanctioned euthanasia for existential suffering is not only counterproductive, it’s dangerous. Fundamentally, we would erode any meaningful difference between cases of suicide we regard as acceptable, and those we see as regrettable and befitting state intervention.</div>
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We might regard it as regrettable that an educated, wealthy 30-year-old takes their own life due to an existential crisis. Yet it is difficult to say how this is different in morally relevant respects from a 75-year-old who feels their life is complete and is undergoing an existential crisis.</div>
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The case for</h2>
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<strong style="background: transparent; border: 0px; font-size: 16px; font-weight: bold; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">Udo Schuklenk, Professor and Ontario Research Chair in Bioethics, Queen’s University, Canada</strong></div>
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This discussion is mostly hypothetical. There seem to be few, if any, <a href="https://www.rijksoverheid.nl/binaries/rijksoverheid/documenten/rapporten/2016/02/04/rapport-adviescommissie-voltooid-leven/01-adviescommissie-voltooid-leven-voltooid-leven-over-hulp-bij-zelfdoding-aan-mensen-die-hun-leven-voltooid-achten.pdf" style="color: #557585; outline: none; text-decoration: underline; white-space: pre-wrap; word-wrap: break-word;">real-world cases</a> where a competent person’s request for an assisted death is not motivated by an irreversible clinical condition that has rendered their lives not worth living in their considered judgement.</div>
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For instance, <a href="https://www.rijksoverheid.nl/binaries/rijksoverheid/documenten/rapporten/2016/02/04/rapport-adviescommissie-voltooid-leven/01-adviescommissie-voltooid-leven-voltooid-leven-over-hulp-bij-zelfdoding-aan-mensen-die-hun-leven-voltooid-achten.pdf" style="color: #557585; outline: none; text-decoration: underline; white-space: pre-wrap; word-wrap: break-word;">in the Netherlands</a>, most people who ask for euthanasia and who are not suffering from a catastrophic illness, typically experience a terrible quality of life that is caused by an accumulation of usually age-related ailments. These involve anything from incontinence to deafness, blindness, lack of mobility and the like.</div>
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We do not give up on life for trivial reasons. Just think of the many refugees who – on a daily basis – are willing to risk their lives to escape an existence they do not consider worth living. Ending their lives is not typically on top of their to-do list.</div>
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</a><figcaption style="background: transparent; border: 0px; color: #727272; cursor: default; display: block; font-family: "Helvetica Neue", Helvetica, sans-serif; font-size: 11px; line-height: 18px; margin: 0px; outline: 0px; padding: 6px 0px 0px; vertical-align: baseline;"><span class="caption" style="background: transparent; border: 0px; font-size: 11px; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">Think of the many refugees who risk their lives to escape an existence they do not consider worth living. Ending their lives is not on top of their to-do list.</span><span class="attribution" style="background: transparent; border: 0px; color: #cccccc; font-size: 11px; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><a class="source" href="http://one.aap.com.au/#/search/refugees?q=%7B%22pageSize%22:25,%22pageNumber%22:9%7D" style="color: #cccccc; display: inline; font-weight: normal !important; max-width: 100%; outline: none; text-decoration: none; white-space: pre-wrap; word-wrap: break-word;">ZEIN AL-RIFAI/EPA</a></span></figcaption></figure><br />
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The case of the anti-choice activists – who deny there is ever a justifiable reason for euthanasia – has been <a href="http://onlinelibrary.wiley.com/doi/10.1111/bioe.12372/full" style="color: #557585; outline: none; text-decoration: underline; white-space: pre-wrap; word-wrap: break-word;">intellectually and politically</a> defeated. None of the jurisdictions that have decriminalised assisted dying have reversed course, and more jurisdictions are bound to make this end-of-life choice available.</div>
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Public support remains strong in each permissive jurisdiction, particularly so in <a href="https://link.springer.com/article/10.1007/s00038-013-0461-6" style="color: #557585; outline: none; text-decoration: underline; white-space: pre-wrap; word-wrap: break-word;">Belgium and the Netherlands</a> where the majority of citizens support the existing laws.</div>
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Inevitably the question of scope must be addressed: who ought to be eligible to ask for and receive assistance in dying? If a competent person wishes to see their life ended for non-medical reasons, and asks for assistance to do so, I think <a href="http://onlinelibrary.wiley.com/doi/10.1111/j.1467-8519.2011.01939.x/abstract" style="color: #557585; outline: none; text-decoration: underline; white-space: pre-wrap; word-wrap: break-word;">a just society</a> ought to oblige him or her if the following conditions are met:</div>
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<li style="background: transparent; border: 0px; font-size: 16px; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">the person has decisional capacity (is of “sound mind”)</li>
<li style="background: transparent; border: 0px; font-size: 16px; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">the decision is reached voluntarily (without coercion)</li>
<li style="background: transparent; border: 0px; font-size: 16px; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">no reasonable means are available, that are acceptable to the person, that would render their lives worth living again in their own best judgement</li>
<li style="background: transparent; border: 0px; font-size: 16px; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">based on everything we know, the condition that motivated their request is irreversible.</li>
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The view that medicine is a profession aimed only at maintaining life, regardless of a patient’s quality of life, <a href="https://us.macmillan.com/books/9780312144012" style="color: #557585; outline: none; text-decoration: underline; white-space: pre-wrap; word-wrap: break-word;">is dying its own death</a>. If a clinical, psychological or other professional intervention does not benefit a patient to such an extent that they consider their continuing existence worthwhile, by definition that is not a beneficial intervention.</div>
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Equally, if an intervention, at a burden acceptable to the person, renders in their considered judgement their lives worth living again, they will not ask for an assisted death.</div>
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In most corners of the world people have fought hard to increase their individual freedoms to live their lives by their own values. A significant state interest is harmed if the state wishes to infringe on such autonomy rights.</div>
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<strong style="background: transparent; border: 0px; font-size: 16px; font-weight: bold; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">Xavier Symons</strong></div>
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It is true the health system, and indeed the state, should respect patient autonomy. Yet in practice we often put other considerations ahead of concerns like autonomy. Patients may not receive the treatments they request for a variety of reasons, like they may be prohibitively expensive, have a negligible chance of success, or no medical justification.</div>
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I believe if it is harmful to the interests of the state to legalise euthanasia for patients without a terminal illness, then the state has a right to refuse.</div>
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Significantly more research needs to be conducted on the social impacts of euthanasia, and physician assisted suicide, for patients without a medical condition. In this case, we have no <a href="http://www.oregon.gov/oha/ph/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Pages/index.aspx" style="color: #557585; outline: none; text-decoration: underline; white-space: pre-wrap; word-wrap: break-word;">“Oregon model”</a> – an assisted suicide regime seen by many as an example of a safe and well-regulated system – to confirm or assuage our concerns. Jurisdictions such as Oregon only allow assisted suicide for patients with a terminal illness.</div>
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<strong style="background: transparent; border: 0px; font-size: 16px; font-weight: bold; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">Udo Schuklenk</strong></div>
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I echo Xavier’s plea to improve health care in order to improve our quality of life, and, as a likely corollary of this, to reduce the number of requests for medical aid in dying. However, even in the best of all possible health care worlds, unless unbearable suffering itself has been eliminated, some patients will ask for an assisted death. No amount of “dignity therapy” rhetoric and references to small-scale studies changes that fact of the matter.</div>
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Xavier correctly mentions some reasons for doctors justifiably not providing certain patient-requested medical care. They are all based in different ways on harm-to-others justifications such as resource allocation rationales, or are futility-related (arguably also a case of harm-to-others given the reality of limited health care resources). This reasoning is not applicable to the case under consideration given the self-regarding nature of the request.</div>
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Xavier is correct that the state would be under no obligation to legalise euthanasia for not catastrophically ill patients if that was significantly harmful to the interests of the state. However, there is no evidence that the availability of euthanasia is harmful to state interests.</div>
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike>The original Conversation piece can be found<a href="https://theconversation.com/viewpoints-should-euthanasia-be-available-for-people-with-existential-suffering-79564"> here</a>.udo schuklenkhttp://www.blogger.com/profile/16463788271983027260noreply@blogger.com