Showing posts with label ethics. Show all posts
Showing posts with label ethics. Show all posts

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]

Wednesday, October 29, 2014

Google scholar h5 indices for English language bioethics/health care ethics/medical ethics journals

I suspect I could have had this easier, but be that as it may, I searched for bioethics/health care ethics/ medical ethics journal on google scholar to see how they fare in terms of citations over the last five years. I'm afraid the list isn't quite complete as for some reason at least one well-known quality publication, the Kennedy Institute of Ethics Journal, just doesn't pop up. I'm under no delusion that citations do not equal quality, but I do think it is noteworthy that the journal 'Ethics' in particular doesn't do terribly well in terms of uptake of its content. At least if you take its stellar reputation into account. It is possible that ethicists need longer than 5 years before they can respond adequately to the papers published in Ethics, or that a deluge of citations is hidden in monographs and anthologies, disproportionate to the other journals on this list that is, but it's also possible that few of those who praise Ethics do actually anything with its content. I think it is also noteworthy that OA journals seem to have it a tad bit easier to rack up citations. My views about pay-for-play journals are well-known, I won't repeat them here.

Quite possibly the below table will be displayed in odd ways on your screen. If it is, don't hesitate to give me a shout and I'll send you a pdf.

Usual CoI blurb applies. I co-edit two of the journals in this list.
List up-dated Nov 16, 2014.


 


                                                                                                          H5 index*            H5 median**


Journal of medical ethics                                                                             29                           40

American Journal of Bioethics                                                                    26                           33
Nursing Ethics                                                                                                25                           32


Bioethics                                                                                                         23                           34
Journal of Law, Medicine and Ethics                                                         23                           31


Ethics                                                                                                              19                           29

Hastings Center Report                                                                               18                           33
BMC Medical ethics                                                                                     17                           27

Neuroethics                                                                                                   17                           21
Journal of Medicine and Philosophy                                                   16                         23
Perspectives in Biology and Medicine                                                16                         22
Health Care Analysis                                                                           15                        28
Journal of empirical research on human research ethics: JERHRE   14                           24
Nursing Philosophy                                                                                      14                           24
Medicine, Health Care and Philosophy                                                     14                           18
Journal of Clinical Ethics                                                                              13                           18
Developing World Bioethics                                                                       12                           20

Public Health Ethics                                                                                     12                           17
Theoretical Medicine and Bioethics                                                          12                          17

Cambridge Quarterly of Health Care Ethics                                             11                           14

Journal of Bioethical Inquiry                                                                       11                           14
Indian Journal of Medical Ethics                                                                 10                           11

Asian Bioethics Review                                                                                  9                            35
International Journal of Feminist Approaches to Bioethics                    8                             12

American Journal of Bioethics Primary Research                                     8                              11

South African Journal of Bioethics and Law                                               5                             10
Christian Bioethics                                                                                          5                              7

Monash Bioethics Review                                                                             5                              7
Journal international de bioethique/
International journal of bioethics                                                                5                              5

Yale Journal of Health Policy, Law, and Ethics                                         4                             17
National Catholic Bioethics Quarterly                                                         3                              4

Narrative Inquiry in Bioethics                                                                       2                              5
Turkiye Klinikleri Journal of Medical Ethics-Law and History                  2                              4

 

*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 2009-2013 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

 

Tuesday, August 12, 2014

WHO Ebola ethics panel excluded those most affected

I'm reproducing here a piece I'm having out over at The Conversation
The World Health Organisation has been in a rush to deal with the Ebola outbreak in West Africa. Last week it declared it an international health emergency, and after two infected US doctors were given an experimental drug, it also convened an “ethics panel” to address the use of unregistered interventions for Ebola disease.
In a subsequent statement, the WHO said drugs unproven in humans could be used on Ebola patients:
In the particular circumstances of this outbreak, and provided certain conditions are met, the panel reached consensus that it is ethical to offer unproven interventions with as yet unknown efficacy and adverse effects, as potential treatment or prevention.
Ethical criteria must guide the provision of such interventions. These include transparency about all aspects of care, informed consent, freedom of choice, confidentiality, respect for the person, preservation of dignity and involvement of the community.
Given that ethics is so central to this discussion and that deploying experimental agents in a population is fraught with difficulty, it’s strange that the ethics panel it put together wasn’t really one at all. Only few of the panelists had any professional background in bioethics or medical ethics. Representatives from the countries affected by Ebola were also missing in action; the WHO added panelists from Japan, Australia, Canada and for good measure Saudi Arabia, but no one from the countries actually affected. Women were also under-represented on the panel.
HIV/AIDS activists fought hard in the early days of the AIDS epidemic to ensure that people affected by the disease are today represented on these kinds of panels. WHO saw it fit to do without. A remarkable turn of events.
Some of those on the panel may have expertise on Ebola, but with a large body of academic literature out there on the two relevant issues, namely ethics of access to experimental drugs in case of catastrophic illness and the ethics of resource allocation, the top names in bioethics and medical ethics that deal pretty much only with these issues, weren’t included on the panel. As Greg Moorlock has argued previously on The Conversation, this happens all too often when big decisions are being made.
It may well be, as some have argued, that getting African panelists at such short notice to Geneva might have been impossible due to visa constraints and similar unfortunate matters. But with some panellists participating virtually via Skype or some other video conferencing tools, it would no doubt have been possible to include some West African representatives from countries affected by Ebola.
The problem with haphazard activism such as that displayed by WHO is that it destroys credibility and trust. There is already a high degree of distrust of foreign aid workers in the countries affected. Talkfests, where others in Switzerland discuss what should or should not happen with access to experimental agents for people in countries of the global south but who are not at the table, is the last thing needed now.
One could counter that the WHO has been responding, however imperfectly, to a health emergency and that it needed to press ahead. But actually at this point in time, there isn’t an experimental agent to be distributed: the company that produced ZMapp, the drug used on the two US health workers (who have since recovered) and a Spanish missionary (who died), has said it is out of stock.
The Nigerian government also recently said that Nigerians wouldn’t be able to access the drug for at least a few months because the drug existed only in such small amounts.
In other words, there was no need for such a rush as far as assembling this panel was concerned.
Experimental agents may be used under certain ethical circumstances, which the WHO knows. And the ethics and regulatory frameworks guiding access in many countries are more sophisticated than the statement of good things the WHO panel produced. Decisions about the how and when should be the responsibility of national jurisdictions and negotiations between nation states. If there wasn’t this exotic thing called Ebola that has triggered a worldwide moral panic, demanding “action”, no doubt we would have been spared this expert statement.
Considering that Ebola constitutes an international public health emergency, other ethical issues such as compulsory confinement of infected people or the professional obligations of medical personnel to patients would have been more appropriate issues for a WHO ethics panel to discuss but weren’t.
I suspect that the WHO wanted to be seen to be doing something. To its credit it put ethics at the forefront of its thinking about the crisis. Alas, it chose the wrong topic at the wrong point in time and arguably, by and large, the wrong people to do so.

Monday, August 11, 2014

What's wrong with you WHO?

I'm sure you've heard about the Ebola epidemic going on in West Africa.WHO has recently declared it an international health emergency (quite unlike other diseases in the region that likely kill more people). Of course, once one has jumped on to the panic generating band wagon, one also needs to demonstrate that one is doing 'something'.WHO decided to convene a meeting of medical ethics folks to discuss the distribution of (non-existent in any meaningful quantities) experimental therapeutic agents and (non-existent in any meaningful quantities) experimental preventive vaccines. Turns out, most attendees of the meeting had no ethics background at all.

Given the urgency to hold the meeting (in the absence of any goods to be resource allocated there's zero urgency to organize this event) WHO seems to have decided to stab randomly at its ethics rolodex, because the list of delegates is quite remarkable. Most of them are not known to have any public health ethics competence. None of the folks attending the meeting have published on ethical issues involved in access to experimental drugs in case of catastrophic illness. A look in recent issues of academic journals might have helped WHO to pick folks familiar with these sorts of issues. Alas, the rolodex clearly had to do.Women are virtually absent. Delegates from the region most affected (actually only affected) are pretty much absent, too. However, there's a Canadian chap, a Japanese chap, and importantly, a bloke from Australia as well as a guy from Saudi Arabia - all places desperately waiting for the first Ebola case to pop up on a flight, so the local media hype can be sustained for awhile longer, and the list goes on.

What on earth were you thinking, WHO, if anything?

Friday, October 04, 2013

Why you should get your flu shots


The flu season is just about upon us. Soon flu shots will be available to virtually everyone free of charge. And yet, if past years are anything to go by, some 20,000 Canadians will be suffering so severely from the flu virus that they will end up in hospital. The rest of us will foot the bill for their by and large avoidable health care costs. Public Health Canada reports on its website that between 2,000 and 8,000 Canadians die every year of the flu or its complications.

Strangely only those of us in possession of a valid health card will be able to access the flu vaccine free of charge through our health care system. That obviously makes no sense at all. Because of this policy those amongst us without a health card will be more likely to contract the flu, and, quite a few of them will pass it on to others. Any sensible public health strategy would offer these shots to anyone to increase the level of protection for everybody.

There are, of course, as with every pretty obvious issue, a large number of people out there who won’t get the flu shots even though they are entitled to receive them free of charge. They encompass conscientious objectors as well as people simply too lazy to bother. People who do not get immunized themselves pose a higher risk to others, both those who are also not immunized as well as those who are immunized. The latter are also subjected to a higher than necessary risk, because while the flu vaccine offers a higher degree of protection, it is not 100% efficacious (few things in modern medicine are).

What is the morality of our behavior in the age of influenza? Are we ethically obliged to get vaccinated? Should it be compulsory for people who have contacts with large numbers of customers, clients or even patients to get vaccinated? Should employers be permitted to fire or remove temporarily from work those employees who refuse to get vaccinated? And what about those of us who catch influenza, should we stay at home, or should we drag ourselves to work or school regardless? Seeing that we would be carriers of a highly infectious illness that has the habit of killing thousands of us every year, should we be yanked off trains, buses and planes to protect members of the public that otherwise would be stuck with us?

Let’s start with the easy one: Yes, we should get vaccinated. It does not take a degree in public health or in bioethics to figure out why this is so. In important matters that affect only ourselves or predominantly ourselves it needs a very good reason for the state to override our decisions. When it comes to influenza vaccination the issue is not only about ourselves but also about potential harm to others. Now, you could say that there wouldn’t be any risk to those who got vaccinated, and whoever does not get vaccinated and decides to venture out during flu season kind of consents to the risk of catching it. That isn’t quite correct. The risk of catching the flu is only reduced by about 60% for those who got vaccinated, and even this figure varies depending on one’s age group and other factors. So, those of us who choose not to get vaccinated not only pose risks to others who also have not been vaccinated but also to those of us who did what they could to protect ourselves and others by getting vaccinated. Basically the negative impact of a single person who decides not to get vaccinated quickly cascades through society. The more people there are who don’t get vaccinated the more people we will see ending up in hospitals and, unfortunately, in the morgues. That does seem an unreasonably high price to pay for individual laziness or unfounded ideas about vaccines and autism.

Autism and vaccines? Oh, in case you have not heard, like with all good things, there are always some people (like ex Playboy model and actress Jenny McCarthy) who make wild public claims about matters they know little about. In the case of vaccines, a quite efficient grassroots campaign has got off the ground irresponsibly misinforming us that we should not get vaccinated lest we wish to increase the risk of developing autism.  Health authorities around the planet, including Health Canada and the Centers for Disease Control in the USA have declared categorically that vaccines do not cause autism. There is zero evidence for the claim that autism is linked to vaccines. Will that stop the fans of conspiracy theories from claiming the opposite? Likely not. Is that a good reason to refuse getting vaccinated? Not really.

Well, back to our questions. What if you failed to get vaccinated or you got vaccinated and you realise the vaccine doesn’t quite do the trick for you. Should you drag yourself to work or school and show that you’re not a wimp? Well, the long and short of it is that you should stay at home to protect others as good as you can. The best you can do is to limit the number of people you interact with while you are highly infectious. The primary aim of your actions should be societal harm minimization. It follows that if you can avoid going on the journey you booked, do not board buses, train and planes as it is very likely that while you and the other passengers are stuck in these confined spaces for a couple of hours, you will infect a whole bunch of others who in turn will infect a whole bunch of others, etc.

Should we require health care professionals who see patients as part of their daily work routine to get vaccinated? Of course we should. Health care professionals typically see people in an already weakened health state. The last thing these patients need is to be treated by professionals who think nothing of passing a dangerous virus on to them. First do no harm remains one of the foundational principles of medical practice. It would behoove health care professionals refusing to get vaccinated against influenza to keep this one in mind. Even though influenza vaccines do not grant 100% protection, at least they dramatically decrease the likelihood of a vaccinated health care professional catching and passing the virus on to their patients. Working in the healing professions both comes with special rights as well as special obligations.

Udo Schuklenk is a bioethics professor at Queen’s University, he tweets @schuklenk

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