Sunday, January 21, 2018

The trouble with Public Health: HIV/AIDS in Canada as a case in point

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.
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.
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.
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.
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.1
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.

Footnote

  1. 1
    Harris, K. (2017, December 1). Liberals want to limit prosecutions of people who do not reveal status to sex partners. CBC NEWS. Retrieved from http://www.cbc.ca/news/politics/liberals-hiv-criminalization-1.4428395

Monday, January 15, 2018

How can we ensure that the global south benefits from and contributes to the field of bioethics?



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.


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.[1]

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.

Short of asking academics to exploit themselves by volunteering to produce and disseminate academic journals and their content, reliably, over decades, someone will have to pay for the resource intensive production of journals and to ensure the reliable availability of their content.

I have yet to see from those complaining about access problems realistic solutions to this challenge. They mostly, and typically correctly identify the problem, but beyond grandstanding they offer no answers. They expect someone else to sort things out for them.

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.

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.

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.

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.[2] There appear to be very few truly independent scholars from the global south among those in charge of organising these global events.

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’.

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[3]:

·         Country of origin: GFBR would like to ensure a representative distribution of delegates from different regions;

·         Background /current area of expertise: 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;

·         Membership of an IRB/REC: Membership of an Institutional Review Board / Research Ethics Committee is not a prerequisite for attending GFBR, but may be taken into consideration;

·         Experience of ethics: 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;

·         Reasons for attending the meeting: 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.



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.



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 Health for all in an unequal world: obligations of global bioethics and is locally hosted by SAMA, the resource group for women’s health, the Forum for Medical Ethics Society, and, of course, the IAB.[4] 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.

















[1]Schuklenk U. 2015. Fighting Imaginary Enemies in Bioethics Publishing. Bioethics 29(8): ii-iii. Schuklenk U, Magnus D. 2017. Justice and Bioethics: Who Should Finance Bioethics Publishing? AJOB 17(10): 1-2.
[2] http://www.gfbr.global/about-the-gfbr/ [Accessed 28 November 2017].
[3] http://www.gfbr.global/forum-meetings/ [Accessed 28 November 2017].
[4] http://www.iab2018.org [Accessed 28 November 2017]

Tuesday, July 25, 2017

2017 Bioethics journals h5 / h5-median index

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.


Quite possibly the below table will be displayed in odd ways on your screen. 

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.


                                                                                                                           h5               h5-median

Nursing Ethics                                                                              34           44
Journal of Medical Ethics                                                             31          42
The American Journal of Bioethics                                              28           37
Journal of Law, Medicine and Ethics                                           27           40
Science and Engineering Ethics                                                        30           45
Bioethics                                                                                       25          31       
Neuroethics                                                                                   23           36
bmc medical ethics                                                                       23           32
Medicine, Health Care and Philosophy                                        20         25
Hastings Center Report                                                                19          32
American Journal of Bioethics Neuroscience                              18            28
Journal of Medicine and Philosophy                                            18          22
Journal of Empirical Research on Human Research Ethics         17          20
Health Care Analysis                                                                     16       22
Nursing Philosophy                                                                        15          29
Developing World Bioethics                                                          15          28
Journal of Bioethical Inquiry                                                           15          16
Theoretical Medicine and Bioethics                                               14          18

Public Health Ethics                                                                       13          22

Cambridge Quarterly of Healthcare Ethics                                     13          18
HEC Forum                                                                                     12          28
Kennedy Institute of Ethics Journal                                                12          19
Perspectives in Biology and Medicine                                                12        15
NanoEthics                                                                                     12          16
The Journal of Clinical Ethics                                                        12          16
Indian Journal of Medical Ethics                                                     11          18
American Journal of Bioethics Primary Research                           11           15
Journal of Medical Ethics and History of Medicine                          9              17
Narrative Inquiry in Bioethics                                                                8              13
International Journal of Feminist Approaches to Bioethics              8             11
Ethik in der Medizin                                                                         8              10
South African Journal of Bioethics and Law                                         8             9
Medical Ethics Journal                                                                     7              9
Yale Journal of Health Policy, Law, and Ethics                                    6             12
Monash Bioethics Review                                                                 6              8
Asian Bioethics Review                                                                   5             10
Christian Bioethics                                                                            5              6
Journal international de bioethique                                                         4              8
Ethics in Biology, Engineering and Medicine                                   4              6
European Journal of Bioethics                                                         4              4
National Catholic Bioethics Quarterly                                              3              5

*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
**h5-median for a publication is the median number of citations for the articles that make up its h5-index

Thursday, July 06, 2017

Viewpoints: should euthanasia be available for people with existential suffering?

Here's a piece I have put together jointly with Xavier Symons for The Conversation.

Euthanasia debates often focus on people experiencing unbearable physiological or psychological suffering. But research suggests “loss of autonomy” is the primary reason for requesting euthanasia, even among patients with terminal cancer. There have also been suggestions existential suffering could be one of the main motivations behind such requests.
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 desire for death.
Some bioethicists argue 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?
A case in point: 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?

The case against

Xavier Symons, Research Associate, University of Notre Dame Australia
Some may think people who request euthanasia do so because of excruciating and unremitting pain. The reality is almost always more complex. Literature on assisted dyingsuggests 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.
A 2011 study of Dutch patients who requested euthanasia indicated that “hopelessness” – the psychological and existential realisation one’s health situation will never improve – was the predominant motivation of patients who requested euthanasia.
And a recently published Canadian study of requests for medical assistance in dying 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”.
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.


Spiritual or existential care can help someone who feels their life has lost meaning. from shutterstock.com

New approaches to end of life care, such as spiritual or existential care, engage at a deep level with the complexity of the suffering of patients with terminal illness. And, as has been stressed by several commentators, 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.
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 tired of life or afraid of ageing or death.
These cases are interesting insofar as they are not motivated by an underlying pathology. Yet there is much reason for concern.
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.
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.

The case for

Udo Schuklenk, Professor and Ontario Research Chair in Bioethics, Queen’s University, Canada
This discussion is mostly hypothetical. There seem to be few, if any, real-world cases 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.
For instance, in the Netherlands, 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.
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.


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.ZEIN AL-RIFAI/EPA

The case of the anti-choice activists – who deny there is ever a justifiable reason for euthanasia – has been intellectually and politically 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.
Public support remains strong in each permissive jurisdiction, particularly so in Belgium and the Netherlands where the majority of citizens support the existing laws.
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 just society ought to oblige him or her if the following conditions are met:
  1. the person has decisional capacity (is of “sound mind”)
  2. the decision is reached voluntarily (without coercion)
  3. no reasonable means are available, that are acceptable to the person, that would render their lives worth living again in their own best judgement
  4. based on everything we know, the condition that motivated their request is irreversible.
The view that medicine is a profession aimed only at maintaining life, regardless of a patient’s quality of life, is dying its own death. 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.
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.
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.

Xavier Symons
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.
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.
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 “Oregon model” – 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.

Udo Schuklenk
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.
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.
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.
The original Conversation piece can be found here.