tag:blogger.com,1999:blog-128335672024-03-28T06:54:57.679-04:00Global bioethics blogPromoting reflection on bioethics and research ethics issues in the developing worldStuart Renniehttp://www.blogger.com/profile/08848432130984308773noreply@blogger.comBlogger350125tag:blogger.com,1999:blog-12833567.post-72355223573806737752020-04-30T17:47:00.001-04:002020-04-30T17:47:26.184-04:00COVID-19, rationing and the question of ageDiscussions about the role that age should or should not play when allocating medical resources during the COVID-19 crisis have been deeply revealing. Probably no bioethicist would come out in favor of basing such decisions simply on (older) age, though there is no problem finding such opinions on Twitter. But many bioethicists heavily rely on likelihood of recovery and number of years of life expected post-treatment in their favored allocation schemes, which in the context of COVID-19 will frequently come down to the same thing. In addition, constructs like the 'life cycle' or the 'fair innings' view are often sprinkled into the decision-making recommendations, i.e. the idea that all other things being equal, resources like mechanical ventilation should be given to those who have not yet been able to enjoy all stages in life's course. It is probably safe to say that, in most influential bioethics allocation schemes, age is not your friend.<br />
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These ways of thinking about age and rationing have been defended by prominent bioethicists for years, pre-COVID. Some of their limitations have been pointed out over the years, and in the wake of COVID-19, they are being pointed out again. As Harald Schmidt <a href="https://www.nytimes.com/2020/04/15/opinion/covid-ventilator-rationing-blacks.html">writes in the New York Times</a>, despite the appearance of impartiality and equity, the criteria of likelihood of recovery and number of years of life expected post-treatment in fact biases access to medical care against those in society whose infected bodies were already compromised by racial, class and other factors. In addition, the idea of making decisions that favor youth over the aged on the basis of 'fair innings' is problematic for similar reasons. Just because a person is old does not mean that they had a good time of it: this confuses quality and quantity. Those who have suffered from systemic discrimination throughout their lives have had 'unfair innings'. And now, on top of all that, they are accorded less priority for medical resources during a pandemic, because they had the audacity to stick around. The common thread here is that commonly promoted allocation criteria fail to acknowledge how their implementation could compound existing social injustice.<br />
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But there is also something else. These allocation criteria are commonly promoted as if they are obvious and universally accepted. But there are good reasons to question this, as <a href="https://onlinelibrary.wiley.com/doi/10.1002/hast.1100">Nancy Jecker points out in a recent article in The Hastings Center Report</a> (#behindapaywallgoddammit). Moral standing associated with age differs in different cultural contexts. In some countries, youth are favored over those who are old for a number of reasons, including the idea that youth are or are potentially 'more productive' than those who are old. Such countries tend towards a 'hourglass' conception of the life course, i.e. that your moral status gradually diminishes over time, which is supposed to explain why the death of a child is more tragic than the death of an older person. But in other contexts have alternative conceptions of the life course and aging where, if anything, some societies tend to discriminate against the young, and understand the moral importance of a person as something that grows over time and in that person's relationships with others. From this perspective, an older person is not someone lacking in utility whose allotment of time is running out, but someone who has gradually accumulated worth ('become more human') in the community.<br />
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There is no way of determining which conception of aging and moral standing is 'correct'. The point here is rather that criteria commonly proposed for the allocation of scarce medical resources in prestigious journals by prominent bioethicists during the COVID-19 crisis carry with them a number of underlying cultural assumptions. Making life-altering decisions on their basis may appear perfectly appropriate in some contexts, but expecting one size to fit all is unreasonable. And this matters in a global pandemic.Stuart Renniehttp://www.blogger.com/profile/08848432130984308773noreply@blogger.com26tag:blogger.com,1999:blog-12833567.post-61861792257743308862020-04-23T13:11:00.000-04:002020-04-23T13:11:25.029-04:00COVID-19 and American exceptionalism Like serious health emergencies tend to do, COVID-19 is magnifying pre-existing economic, social and political problems in countries around the world. The United States is a glaring example: having responded slowly to the pandemic threat, it finds itself approaching 50,000 confirmed COVID-19 related deaths, shortages of personal protective equipment and other medical necessities, and a massive economic meltdown in a society with a threadbare social safety net. Unemployment has skyrocketed. Businesses are going bankrupt. The general chaos is further stirred by a science-averse and business-friendly president, and protesters demanding the 'liberation' of citizens from the 'tyranny' of public health restrictions aimed at protecting them. Right-wing media channels call the pandemic a hoax <a href="https://www.cnn.com/2020/04/21/politics/john-oliver-fox-news-coronavirus/index.html">while at the same time</a> telling its own employees to work from home and follow public health guidelines. There is a lashing out at perceived enemies: the World Health Organization, China, whoever. Every day brings something mind-boggling. If the country was a person, you might prescribe cognitive-behavioral therapy, bedrest, and Zoloft. But it is not a person, it is a nation where people are dying en masse from COVID-19, with no end in sight, and nothing confidence-worthy at the wheel.<br />
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I guess it is predictable that, in this situation, discussions about 'American exceptionalism' are going to crop up. The positions usually fall into three camps: (1) America is still exceptional in terms of being a economic-moral-cultural leader of the world and beacon of democracy etc., as opposed to 'shithole countries', and it is just going through a bit of a rough patch now; (2) America was exceptional, but now it isn't, and it has been in decline since [fill in the blank]; (3) The whole idea of 'American exceptionalism' was always a myth built on amnesia and hype, given its foreign policy history and longstanding internal social pathologies, and now the myth is being busted in Technicolor 24/7 for all the world to see.<br />
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The first position is represented by those who think that the path forward is to wave more flags, carry more firearms, and use the word 'freedom' in sentences even more than usual. The second position is represented in a New York Times piece that ran <a href="https://www.nytimes.com/2020/04/23/world/europe/coronavirus-american-exceptionalism.html">today</a> entitled: <i>'Sadness' and Disbelief from a World Missing American Leadership</i>. In it, we are supposed to think that the United States had a glorious past (including apparently winning the Second World War without Soviet assistance) and the world now has heavy nostalgia for that made-in-the-USA dispensation of global goodness. But the reporter apparently did not interview anyone who takes position #3 seriously, which may in fact be in the ascendency during the COVID-19 crisis. Look at the reader responses to the New York Times article, for instance. Or look at articles coming in from the global south, such as <a href="https://www.aljazeera.com/indepth/opinion/pandemic-catalyst-decolonisation-africa-200415150535786.html">this</a> or <a href="https://oliviarutazibwa.wordpress.com/2020/04/12/the-corona-pandemic-blows-the-lid-off-the-idea-of-western-superiority/">this</a>, where the unraveling of the United States' grip on the world is regarded as not entirely unwelcome.<br />
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Stuart Renniehttp://www.blogger.com/profile/08848432130984308773noreply@blogger.com16tag:blogger.com,1999:blog-12833567.post-42852691026632351482020-04-04T15:27:00.000-04:002020-04-04T15:35:23.595-04:00Bioethics blog as plague journal I have not been active on this blog for quite some time. The causes are multiple, but one comes to my mind first: do people still read blogs, anyway? The doubt is de-motivational. Over the last years, it seems that more and more bloggers have switched over to Twitter, which is to say that they have stopped posting longer pieces beyond 'threads' on that platform. You can see Twitter's attraction: less of an investment in time and greater likelihood of immediate feedback or impact. It fits better in our life-work imbalence. This blog too has been associated with a Twitter account since 2012 (@BioethicsGlobal), but over the years I have found that the elements that make Twitter attractive can also make it repulsive. I think Twitter ought to be renamed 'Oversharing', or more to the point, 'Hostility'. I am there for the retweeted news items and pet videos, mostly.<br />
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So why back to the blog, if blogging has been culturally sidelined? The answer, like the (unhappy) answer to a lot of questions these days, is COVID-19. It is not a matter of getting likes or being retweeted, anymore than it was for Daniel Defoe when he wrote <i>A Journal of a Plague Year </i>in 1722. It is more a matter of trying to bear witness, in a medium somewhat more accommodating than Twitter, though without the detachment and hindsight that the coming tsunami of bioethics books on COVID-19 are likely to have. Right now, we really don't know where all this is going.<br />
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In the last two months, bioethics has been reacting to the COVID-19 epidemic in all sorts of different ways. One way to look at the bioethics response is by categorizing it (very roughly) in terms of medicine, science, politics and art.<br />
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<i>Medicine</i>: the speed at which recommendations have been formulated to guide the allocation of scarce medical resources has been amazing. It is almost an epidemic in itself. True, questions about fair allocation has always been in the American bioethics wheelhouse, even if talk of rationing health care there is also somehow taboo. It makes sense that bioethicists would want to be useful in this particular area, though you can wonder how much the schemes will really come into play in the terrible rough and tumble of ICU units.<br />
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<i>Science</i>: when a pandemic strikes the richer nations, there seems to be a rise in epidemiology talk in the general public. This could be a good thing, if it means entrenching a public health mindset. But sometimes it also means that a lot of people are talking out of their their hats. The more epistemological bioethicists find themselves combatting rumor and questioning the assumptions of mathematical models. And in addition, there is the question of what kinds of scientific studies should be conducted (and how) in pandemic circumstances, something much closer to home for European and American bioethicists this time around, when the mayhem is happening in Los Angeles and not just Liberia.<br />
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<i>Politics</i>: the virus is apolitical, but the responses to it by countries, communities and individuals are political through and through. As has been remarked before many times, and forgotten many times, an epidemic magnifies whatever problems were pre-existing in the body politic. And apparently we have a lot of problems, worldwide. Politicians may put re-election interests before scientific facts and public health imperatives. Instead of social distancing out of social solidarity, people may go out shopping for guns. In a horrible calculus, the value of the economy is weighed against massive numbers of the dead. Not to mention the geopolitics.<br />
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<i>Art</i>: there are a number of websites devoted to the COVID-19 pandemic from a statistical perspective. Deaths and confirmed infections per country are continuously updated. Like obscene things in general, the numbers are hard to look at and hard to look away from. But every death is terrible, for the person concerned and the fabric of relations from which they were torn. The human face of the pandemic, from the perspective of the infected, their families, health care workers, and others -- in this case to some extent literally everyone, even the billionaires -- also should inform how people in bioethics respond. This is a world of suffering and human drama, not a trolly problem, and bioethicists need to bring out their ethnologist, novelist, poet.<br />
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In the weeks (months?) that come, this blog will focus on the COVID-19 response in low- and middle-income countries, especially in sub-Saharan Africa. The pandemic is only just starting to pick up there. Different countries face different challenges, and context matters, but there are some overarching issues. The health care infrastructure in many places is weak. In most if not all countries, there is severe poverty. Social distancing or 'stay in place' may be unrealistic where people have challenges accessing running water, live in crowded townships, or rely on face-to-face contacts to survive. Unlike elsewhere, only a small minority have the luxury of continuing their livelihoods online. What ethical issues will this confluence of circumstances engender and expose? There is already concern that the global supply chain of medical resources is being diverted towards richer and more powerful northern countries, from whom Africa can seemingly expect little humanitarian aid this time around. What will 'allocation of scarce medical resources' look like when (as is feared) fragile health care systems are rapidly overwhelmed?<br />
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<br />Stuart Renniehttp://www.blogger.com/profile/08848432130984308773noreply@blogger.com15tag:blogger.com,1999:blog-12833567.post-8766374429113430382019-05-17T00:04:00.000-04:002019-05-17T00:04:16.514-04:00Francophone Africa: bioethics terra incognita? My colleagues and I have written about this before: stimulating bioethics in Francophone African countries involves a number of significant hurdles. First, there is language. Bioethics is predominantly expressed in English: the journals are in English, the majority of degree programs in bioethics are conducted in English, as are the vast majority of books, conferences, scholarship opportunities and so on. Designing a bioethics course makes this crystal clear: what readings are you going to assign? The second hurdle is that French-language bioethics (mainly from France and Quebec) is generally not focused on the kinds of social/economic/political circumstances that researchers, clinicians and public health practitioners in Africa have to wrestle with. 'Developing world bioethics' has been getting more airplay over the last decade, but as far as Africa is concerned, the focus is predominantly on ex-British colonies.<br />
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It is not just in bioethics, apparently. At the moment I have been reading about the history of research during the colonial period in Africa. <a href="https://www.amazon.com/Africa-Living-Laboratory-Development-Scientific/dp/0226803473/ref=sr_1_fkmrnull_1?keywords=Tilley+africa+laboratory&qid=1558065701&s=gateway&sr=8-1-fkmrnull">Africa as a Living Laboratory</a> by Helen Tilley is a fascinating read about how scientific research in Africa mixed and mingled with the interest and exercise of colonial powers. I picked up a copy of Randal M. Packard's <a href="https://www.amazon.com/History-Global-Health-Interventions-Peoples/dp/1421420333/ref=sr_1_1?keywords=A+History+of+Global+Health&qid=1558065755&s=gateway&sr=8-1">A History of Global Health</a>, which starts with colonial health initiatives and runs right up to HIV and PEPFAR. Melissa Graboyes' The <a href="https://www.amazon.com/Experiment-Must-Continue-1940-2014-Perspectives/dp/0821421727/ref=sr_1_fkmrnull_1?keywords=The+experiment+must+continue+Melissa&qid=1558065795&s=gateway&sr=8-1-fkmrnull">Experiment Must Continue</a>: Medical Research and Ethics in East Africa is also an engaging and informative read. But here too the focus is almost exclusively on Anglophone Africa. So whereas you can get at least some sense from these books of what kinds of health research with humans was taking place in Africa long before research ethics committees and 'bioethics' came onto the scene, what was going on in Francophone Africa during this period seems to be much harder to discern. To me at least.<br />
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This is unfortunate if you want to discuss historical events and patterns that have shaped relationships between (say) researchers and the larger community. Why should anyone in Francophone Africa, wanting to study bioethics, have to care about what happened in the Tuskegee Syphilis study? Bioethics education in this part of the world should include the local history of experimentation, at least as far back as the colonial period. The search continues. Stuart Renniehttp://www.blogger.com/profile/08848432130984308773noreply@blogger.com118tag:blogger.com,1999:blog-12833567.post-32136043170416504862018-03-28T00:06:00.001-04:002018-03-28T00:06:48.516-04:00Comparing trust-based and information-based consentI remember watching people in the Democratic Republic of Congo consenting to biomedical research, a few years back. As the process of explaining the research study wore on, you often got the sense that prospective participants (by this time rolling their eyes) really just wanted to sign the form and get the whole consent thing over with. That attitude towards consenting -- not at all specific to resource-constrained settings -- can be explained in a variety of ways. People carry the burden of their own lives and might just be fatigued. Or they may just be more interested in whatever benefits or incentives the study might offer than what the study is about or involves. Yet another possibility is that those who are not really taking in the consent information are basing their decision to join the study on trust: trust in the researcher taking the consent and/or trust in the institution the researcher represents. Some social science studies of participant decision-making processes bear this out: people sometimes agree because they trust that the researchers will act responsibly.<br />
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The standard view is that decisions based primarily on trust do not constitute valid informed consent. Such consent is regarded as morally inferior to information-based consent, where prospective participants digest relevant information and make rational decisions in accordance with their own values. <a href="https://www.ncbi.nlm.nih.gov/pubmed/28240791">An interesting article in <i>Bioethics</i> </a>challenges the standard view, arguing that trust-based consent is not inferior to information-based consent in the key ways that consent is morally supposed to matter: as an expression of autonomy and as a safeguard against coercion, manipulation and exploitation. Of course, consent based on trust is not protective against abuse if researchers or research institutions are not trustworthy, but (the authors argue) information-based consent is equally powerless in that regard.<br />
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Will this reasoned advocacy for trust-based consent have legs? Hard to say. There is a lot of confidence (trust?) in the more information-based approach to consent, perhaps because it makes us look more cognitive and rational, or because it can be associated with all sorts of procedures, and we are fond of procedures, even if we also know that people often don't understand much of what they consent to. In any case, the article is well worth a read.<br />
<br />Stuart Renniehttp://www.blogger.com/profile/08848432130984308773noreply@blogger.com74tag:blogger.com,1999:blog-12833567.post-28489859348436920342017-10-10T23:19:00.000-04:002017-10-11T09:07:47.619-04:00Beware of pharmaceutical companies bearing cheap drugs Pharmaceutical companies are for-profit enterprises that make their money by selling medicinal drugs. This might seem stupefyingly obvious, but it can get (briefly) obscured when these companies distribute shiny pamphlets suggesting that the promotion of human well-being is their ultimate mission or when they act in seemingly philanthropic ways. Scratch the surface, or just wait until the smoke clears, and the profit motive comes back into view. This is partly why bioethics workers find pharmaceutical companies fascinating and appalling: sometimes they offer a glimpse of what it would be like if powerful multinationals really threw their weight behind public health goals, but only a glimpse, because they inevitably veer off to make money and please their stockholders, sometimes in ways at odds with the ethics of research and health care. They are a kind of ethical rogue element. We need them -- who can whip up their own Klonopin? -- but don't expect them to join your health and social justice parade.<br />
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The New York Times <a href="https://www.nytimes.com/2017/10/07/health/africa-cancer-drugs.html">published a piece </a>last week about two multinational drug companies, Pfizer and Cipla, who have made an agreement to charge low prices for 16 common chemotherapy drugs. In addition, specialists from American cancer hospitals are helping to set up a digital repository of clinical oncology guidelines (to be incorporated by IRB into their Watson program) to help doctors hone in on the right medical approach. This initiative is welcome news to health systems and patients in the developing world, because of the gradual epidemiological transition taking place there from infectious disease (HIV, tuberculosis ...) to non-communicable disease (especially cancer). In sub-Saharan Africa, current access to cancer drugs and adequate cancer care is, with some exceptions, flat-out terrible. Any improvement in cancer care could be lifesaving. Just as the lowering of HIV drug prices by big pharma, back in the 1990's, was lifesaving for many.<br />
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Here come the caveats. Prices for HIV drugs were lowered by the work of advocates, which the pharmaceutical industry initially opposed tooth and nail. (They have reaped <a href="http://www.independent.co.uk/news/business/analysis-and-features/big-pharma-and-the-business-of-hivaids-2147987.html">profits</a> from antiretrovirals in the meantime.) While lowering drug prices did make a significant difference for patient care, only 50% of those in sub-Saharan Africa currently in need of HIV drugs are on treatment, two decades later. Much more is needed than lowered drug prices to improve patient and population health. More too than the establishment of an oncology database, particularly if what the guidelines recommend implies human or material resources that are not locally available -- the guidelines could be a grim reminder of what you don't have. And the use of IBM's Watson for clinical care <a href="https://www.statnews.com/2017/09/05/watson-ibm-cancer/">has not been a rousing success</a> so far even in the best of circumstances.<br />
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Most likely, this initiative will help some people, but less than the early hopes and the hype might indicate. The pharmaceutical companies involved will gain from product visibility and may have a competitive advantage as the African population grows older, cancer prevalence rises and if the economies (and consumer buying power) of African countries strengthen. This may be the long game for them, and could help explain why -- long after these chemotherapy drugs were developed -- they are being offered more cheaply to African countries now.<br />
<br />Stuart Renniehttp://www.blogger.com/profile/08848432130984308773noreply@blogger.com12tag:blogger.com,1999:blog-12833567.post-6384348447954946152017-09-30T21:50:00.000-04:002017-09-30T21:54:57.572-04:00Breaking the link between colonialism and global medical missions<div class="MsoNormal">
<span style="border: none;"><span style="border: none;"><span style="border: none;"><a href="http://www.kiplingsociety.co.uk/poems_burden.htm" style="font-family: calibri; font-size: 12pt;">Rudyard
Kipling spoke to the spirit of the age</a></span></span></span><span style="border: none; font-family: "calibri"; font-size: 12pt;"><span style="border: none;"> <span style="border: none;">at the turn of the 20th century when he called on newly
minted imperial powers to <span style="border: none;">“<span style="border: none;">go
send your sons to exile to serve your captives<span style="border: none;">’ <span style="border: none;">need<span style="border: none;">”<span style="border: none;">.
Then, the Western popular imagination was captivated by the myth of the
intrepid white civilizer setting off to tame the savage wilds. Unfortunately,
this fascination did not die out with the empires it justified. We still see
ample evidence of it today,<span style="border: none;"> <span style="border: none;">“<span style="border: none;">medical volontourism<span style="border: none;">” <span style="border: none;">being a prime example.</span></span></span></span></span></span></span></span></span></span></span></span></span></span></div>
<div class="BodyA">
<span style="border: none; font-family: "calibri"; font-size: 12.0pt;"><span style="mso-tab-count: 1;"> </span><span style="border: none;">Healthcare
professionals from Europe and North America are traveling in increasing number
to developing countries for short-term assignments. The effects of most of
these assignments range from the benign to<span style="border: none;"> the
outright harmful; rarely do they offer real benefit to local communities.
Volontourists may arrive poorly equipped to deal with their new cultural,
linguistic, and even medical milieu. They can end up providing redundant care
that undermines nearby he<span style="border: none;">althcare systems and diverts
trained in-country personnel to their activities in an <span style="border: none;">“<span style="border: none;">internal brain drain<span style="border: none;">”<span style="border: none;">. There is a constant risk that the lion<span style="border: none;">’<span style="border: none;">s share of the benefits will be
reaped by the foreign health workers (and their institutions) who carry back <span style="border: none;">the experience they acquired to their far-flung home
countries to decorate their r<span style="border: none;">é<span style="border: none;">sum<span style="border: none;">é<span style="border: none;">s. </span></span></span></span></span></span></span></span></span></span></span></span></span></span></span><span style="border: none; font-family: "calibri"; font-size: 12.0pt;"><o:p></o:p></span></div>
<div class="BodyA">
<span style="border: none; font-family: "calibri"; font-size: 12.0pt;"><span style="mso-tab-count: 1;"> </span><span style="border: none;">This
inequity is a painful reminder of open wounds from a recent colonial past. To
the credit of the Western healthcare community,<span style="border: none;"> </span></span></span><span style="border: none; font-family: "calibri"; font-size: 12.0pt;"><a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5531079/"><u style="text-underline: #000000;"><span style="border: none; color: windowtext; text-decoration: none; text-underline: #000000; text-underline: none;"><span style="border: none;">awareness has become firmly established</span></span></u></a></span><span style="border: none; font-family: "calibri"; font-size: 12.0pt;"><span style="border: none;"> of how problematic
medical volontourism can be. Unfortunately, it has yet to devise a solution.
The push to professionalize <span style="border: none;">“<span style="border: none;">global health<span style="border: none;">” <span style="border: none;">has
hit upon the snag that no one can re<span style="border: none;">ally agree what
the field constitutes. As such, there is no widely-accepted means of weeding
out those with a true passion for global health issues from those with only a
superficial interest. </span></span></span></span></span></span></span><span style="border: none; font-family: "calibri"; font-size: 12.0pt;"><o:p></o:p></span></div>
<div class="BodyA">
<span style="border: none; font-family: "calibri"; font-size: 12.0pt;"><span style="mso-tab-count: 1;"> </span><span style="border: none;">Physician
and global health advocate </span></span><span style="border: none; font-family: "calibri"; font-size: 12.0pt;"><a href="http://www.ghjournal.org/potential-role-for-institutional-review-boards-in-curbing-medical-voluntourism-in-global-health-at-american-academic-centers/"><u style="text-underline: #000000;"><span style="border: none; color: windowtext; text-decoration: none; text-underline: #000000; text-underline: none;"><span style="border: none;">Timothy Laux thinks this role might be played by existing
Institutional Review Boards (IRBs)</span></span></u></a></span><span style="border: none; font-family: "calibri"; font-size: 12.0pt;"><span style="border: none;">. Laux<span style="border: none;">’<span style="border: none;">s case is that,<span style="border: none;"> as the only true contender for authority in health science
ethics enforcement, IRBs are best-positioned to crack down on medical
volontourism.</span></span></span></span></span><span style="border: none; font-family: "calibri"; font-size: 12.0pt;"><o:p></o:p></span></div>
<div class="BodyA">
<span style="border: none; font-family: "calibri"; font-size: 12.0pt;"><span style="mso-tab-count: 1;"> </span><span style="border: none;">Laux
acknowledges that, at first glance, IRBs are imperfect candidates for the job.
Institutional ethics panels<span style="border: none;"> <span style="border: none;">typically
confine themselves to review of research proposals and projects in accordance
with research-specific regulations and the capacities of the environments they
find themselves in. Moreover, they<span style="border: none;">’<span style="border: none;">re frequently overburdened by and understaffed for th<span style="border: none;">eir workload. Taking the step towards passing ethical
judgement on the suitability of individual applicants for volunteer placements<span style="border: none;">—<span style="border: none;">often clinical in nature and on
the other side of the world<span style="border: none;">—<span style="border: none;">would
therefore be massive. But, Laux asks, if not IRBs, who el<span style="border: none;">se? </span></span></span></span></span></span></span></span></span></span></span></span><span style="border: none; font-family: "calibri"; font-size: 12.0pt;"><o:p></o:p></span></div>
<div class="BodyA" style="text-indent: .5in;">
<span style="border: none; font-family: "calibri"; font-size: 12.0pt;"><span style="border: none;">Well, ethics
authorities in the regions where volunteers propose to operate for one.
Admittedly, this is easier said than done. Knowledge of bioethical principles,
let alone the review boards to enforce them, are likely lacking in many of
these enviro<span style="border: none;">nments. A possible solution could be to
integrate bioethics into existing health institutions, like local Ministries of
Health, who are ultimately responsible for permitting short-term medical
missions to take place in developing countries. This would be c<span style="border: none;">hallenging, as it would require <span style="border: none;">‘<span style="border: none;">buy-in<span style="border: none;">’ <span style="border: none;">from
those institutions, and the cultivation of a cadre of health and other
professionals so that they are in a position to inform ministry decisions. But
it is not impossible, and local Ministries of Health have a <span style="border: none;">self-interested motivation in maximizing local benefits
from these international volunteer initiatives. Or, to be more realistic, they
have an interest to at least be in negotiations with initiatives coming from
more powerful countries, to minimize the pot<span style="border: none;">ential
for exploitation.<span style="mso-spacerun: yes;"> </span></span></span></span></span></span></span></span></span></span></span><span style="border: none; font-family: "calibri"; font-size: 12.0pt;"><o:p></o:p></span></div>
<div class="BodyA">
<span style="border: none; font-family: "calibri"; font-size: 12.0pt;"><span style="mso-tab-count: 1;"> </span><span style="border: none;">All of
this is not to say that IRBs have no place in this discussion. They might still
be able to take a lead in assessing the merits of students<span style="border: none;">’ <span style="border: none;">proposed projects, a job more
in line with their existing competences. But at<span style="border: none;"> the
end of the day, the final decision makers should always be the communities who
themselves stand to gain<span style="border: none;">—<span style="border: none;">or
to suffer<span style="border: none;">—<span style="border: none;">at the hands of
sons sent to exile. </span></span></span></span></span></span></span></span></span><span style="border: none; font-family: "calibri"; font-size: 12.0pt;"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b>Gaelen Snell </b></div>
<div class="MsoNormal">
<br /></div>
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Stuart Renniehttp://www.blogger.com/profile/08848432130984308773noreply@blogger.com99tag:blogger.com,1999:blog-12833567.post-19144024547275268632017-09-27T15:02:00.002-04:002017-09-28T11:03:27.290-04:00Trying to look on the bright side of colonialism There has been a big flap this week about an article published in <i>Third World Quarterly</i> entitled '<a href="http://www.tandfonline.com/doi/full/10.1080/01436597.2017.1369037">The Case for Colonialism</a>' by Bruce Gilley at Portland State University. The <a href="http://www.chronicle.com/article/A-Revolt-at-a-Journal-Puts/241289?cid=trend_au&elqTrackId=167489372e3a420cab7c2c32db7e9e58&elq=86720c64545042fd977ab5085330b50a&elqaid=15787&elqat=1&elqCampaignId=6782">controversy</a> seemingly revolves around how the article was published by the journal's editor despite having been rejected by its reviewers, i.e. a violation of the peer review process. But, of course, the complaints are not purely about the process of the paper coming to light: after all, the author is arguing that <u>colonialism was largely a good thing, and we should have more of it.</u> There would be much less political buzz if the journal's editor had, over the objections of reviewers, approved a paper called 'The Case <i>Against</i> Colonialism.'<br />
<br />
As for the paper itself, it is something of a train wreck, and there is a strong case for thinking the reviewers (whose reviews are apparently under lock and key) were right. Gilley maps out a series of epistemic virtues (non-biased data and case selection, internal coherence, falsifiability of claims), which he uses to criticize those opposed to colonialism. In the course of building his own argument, however, he violates all of them, and how. You could base a drinking game on how many times he hoists himself on his own petard. Just one example: Gilley claims that colonialism had 'subjective legitimacy' because, he writes, the colonized populations generally approved of colonial powers and governance. His 'data' for this sweeping claim throughout the paper largely comes in the form of journalistic impressions and anecdotal remarks. This is not the worst of it. As others have pointed out, the most damning problem with the article is his relentless cherry-picking of benefits from colonial rule together with a complete disregard for the long-term and widespread damage colonial rule caused or the self-serving and usually racist motivations behind it. It does not take much effort to see the piece, particularly in the current US political climate, as historical revisionism in the service of white supremacy. No doubt defenders of such views will object that academia should be open to 'alternative voices' in the name of the First Amendment. But academic journals have no obligation to be open to crappy papers.<br />
<br />
What could have been more interesting, instead of making a case for colonialism, is a critical analysis of the myriad ways former colonies grapple with the legacies of colonialism, since they are typically unable to fully embrace or reject them. Whatever 'benefits' might be attributed to colonialism cannot be disentangled from harms and violations; there are no real concepts to faithfully describe this. Tainted benefits? Abuses with an upside? When you drive the N1 out of Cape Town in South Africa, you are enjoying one of the best highways in Africa. You are also 'enjoying' the fruits of the Apartheid system, built by cheap labor, and as you drive, you can see townships where populations of non-whites were dumped and continue to experience the effects of political oppression. Reading Gilley is like hearing someone say: "Get over it. Don't you see you have a highway? So blind, so ungrateful."<br />
<br />
Is there a link here to bioethics? I think so. Bioethics workers in developing countries are in a similarly uncomfortable position of being unable to fully reject assumptions, preoccupations and frameworks originating from the richer countries of the north, but also unable to fully embrace them without losing touch with (and being useful for) their own local context. The decolonization of bioethics in Africa, whose shape is hard to discern, will be a long work in progress.<br />
<br />Stuart Renniehttp://www.blogger.com/profile/08848432130984308773noreply@blogger.com19tag:blogger.com,1999:blog-12833567.post-78932472553880829972017-08-19T15:54:00.001-04:002017-08-19T15:55:40.887-04:00Lessons from the West African Ebola epidemic<div class="Body">
<span style="color: #1a1a1a; font-family: "times new roman"; mso-themecolor: background1; mso-themeshade: 26;">Conventional wisdom—and </span><a href="http://jme.bmj.com/content/42/1/61"><span class="Hyperlink0"><span lang="FR" style="color: #1a1a1a; mso-ansi-language: FR; mso-fareast-font-family: Calibri; mso-themecolor: background1; mso-themeshade: 26;">an article</span></span></a><span style="color: #1a1a1a; font-family: "times new roman"; mso-themecolor: background1; mso-themeshade: 26;"> in the Journal of Medical Ethics </span><a href="http://globalbioethics.blogspot.ca/2015/12/research-ethics-during-medical.html"><span class="Hyperlink0"><span style="color: #1a1a1a; mso-fareast-font-family: Calibri; mso-themecolor: background1; mso-themeshade: 26;">reviewed on this blog</span></span></a><span style="color: #1a1a1a; font-family: "times new roman"; mso-themecolor: background1; mso-themeshade: 26;"> two years ago—advise that health research should not be
conducted during times of crisis. Yes, such conditions compromise the
controlled environments that studies typically require to produce reliable
results, but they can also threaten the ethical integrity of research. Without
institutional mechanisms to hold them accountable, investigators may cut
corners, violate standards of privacy and informed consent, and even endanger
participants. Disruption in the normal function of medical services can also
apply pressure on individuals unable to access care by traditional means to
seek it out by participating in risky research. And even if one assumes that
researchers display honesty beyond reproach, it is still unreasonable to expect
that they would be able to keep their cool in the midst of widespread panic and
social collapse. </span><span style="color: #1a1a1a; font-family: "times new roman"; mso-fareast-font-family: "Times New Roman"; mso-themecolor: background1; mso-themeshade: 26;">But</span><span style="color: #1a1a1a; font-family: "times new roman"; mso-themecolor: background1; mso-themeshade: 26;"> there is a fly in the ointment, at least when it comes to
crises caused by epidemics. Public health organizations are first-responders at
these moments, but they would be dead in the water without relevant data
collected under real-world conditions to guide their actions. In this
situation, the precautionary principle alone is not enough to stop a study
altogether. In fact, it could be argued that an absolute prohibition against
biomedical research in such situations may itself be unethical. The question
then becomes, not whether, but how to guarantee ethical research during
outbreaks?</span><span style="color: #1a1a1a; font-family: "times new roman"; mso-fareast-font-family: "Times New Roman"; mso-themecolor: background1; mso-themeshade: 26;"><o:p></o:p></span></div>
<div class="Body">
<span style="color: #1a1a1a; font-family: "times new roman"; mso-themecolor: background1; mso-themeshade: 26;">The Ethics Review Board (ERB) of
Médecins Sans Frontières (MSF) had to contend with this question during the
2014 Ebola epidemic. </span><a href="https://doi.org/10.1093/phe/phw039"><span class="Hyperlink0"><span style="color: #1a1a1a; mso-fareast-font-family: Calibri; mso-themecolor: background1; mso-themeshade: 26;">They recently chronicled their
experience</span></span></a><span style="color: #1a1a1a; font-family: "times new roman"; mso-themecolor: background1; mso-themeshade: 26;"> in the April issue
of Public Health Ethics. Beyond the herculean task of evaluating 27 research
proposals in the space 12 months—40% of which required review by the entire
board—, they had to take into account the extremely vulnerable environment in
which investigators intended to operate.</span><span style="color: #1a1a1a; font-family: "times new roman"; mso-fareast-font-family: "Times New Roman"; mso-themecolor: background1; mso-themeshade: 26;"><o:p></o:p></span></div>
<div class="Body">
<span style="color: #1a1a1a; font-family: "times new roman"; mso-themecolor: background1; mso-themeshade: 26;">They noted critical ethical
shortcomings in many of the studies they reviewed. Perhaps the most significant
was the failure of many researchers to engage substantively with local ethical
review committees. As a result, several studies did not develop adequate
protocols to deal with the collection and storage of blood samples. This was
particularly troubling in light of </span><a href="http://onlinelibrary.wiley.com/doi/10.1111/j.1365-3156.2006.01682.x/abstract;jsessionid=A59A98D7BD65D9AC2F738B75AA1A6888.f03t02"><span class="Hyperlink0"><span style="color: #1a1a1a; mso-fareast-font-family: Calibri; mso-themecolor: background1; mso-themeshade: 26;">the importance many local
communities attach to human blood.</span></span></a><span class="Hyperlink0"><span style="color: #1a1a1a; mso-fareast-font-family: Calibri; mso-themecolor: background1; mso-themeshade: 26;"><span style="mso-spacerun: yes;"> </span></span></span><span style="color: #1a1a1a; font-family: "times new roman"; mso-themecolor: background1; mso-themeshade: 26;">While the MSF ERB is to be commended for its remarkable
performance under considerable pressure, the authors’ account suggests areas
for improvement. The article does not mention whether the MSF ERB considered
that the studies under review could implicitly coerce participation in exchange
for care. This is a tricky ethical dilemma to work through. Normal medical
systems were entirely overwhelmed in West Africa; many in need of treatment had
no other recourse to access care. Those who had contracted the virus might feel
that involvement in research—even if it was risky or poorly understood—was
their only option. Can participants grant true informed consent under such
pressure? However, there is a counter argument to consider. These studies could
offer some semblance of medical services, perhaps even life-saving ones, in
places where there previously were none. Is it really ethical to deny this
opportunity simply because a study fell short of perfection? Is no choice
better than a forced choice?</span><u style="text-underline: #0563C1;"><span style="color: #1a1a1a; font-family: "times new roman"; mso-themecolor: background1; mso-themeshade: 26;"> </span></u><span style="color: #1a1a1a; font-family: "times new roman"; mso-themecolor: background1; mso-themeshade: 26;">These questions
have no easy answers, but they certainly are ones that ERBs should grapple
with. In the words of the authors, “ethics c</span><span style="background: white; color: #1a1a1a; font-family: "times new roman";">orner-cutting is neither justified nor necessary even in an
emergency.” Public health research during times of crisis or disruption may be
a necessity. However, this is no excuse for slipshod consideration of ethical
consequences, whether by researchers or review boards alike.</span></div>
<div class="Body">
<span style="color: #1a1a1a; font-family: "times new roman"; text-indent: 0.5in;"><b>Gaelen Snell </b></span></div>
Stuart Renniehttp://www.blogger.com/profile/08848432130984308773noreply@blogger.com37tag:blogger.com,1999:blog-12833567.post-59208881284023977162017-06-25T23:07:00.000-04:002017-06-25T23:09:43.896-04:00The case for an Indigenous Bioethics<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif; text-indent: 0.5in;">Indigenous
communities in the Americas experience a disproportionate incidence of illness
and disease compared to the general population. They also possess sophisticated
ethical traditions which diverge and not infrequently conflict with Western-oriented
bioethics. This culture gap between patient, provider and ethicist is no small
public health concern—it can foster feelings of alienation and distrust which
compromise the relationship between those in need of care and those able to
offer it. Research ethicists have already made considerable efforts to bring
sensitivity for aboriginal cultural mores into their discipline, but
bioethicists have been slower out of the gate.</span></div>
<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="text-indent: 0.5in;">This
is the argument made by </span><a href="http://dx.doi.org/10.1080/15265161.2016.1159749" style="text-indent: 0.5in;"><span style="font-family: "times new roman";">an article last year</span></a><span style="text-indent: 0.5in;"> in the American Journal of Bioethics. The authors Jaro
Kotalik and Gerry Martin are well-situated to make such claims—Kotalik is a
bioethicist and Martin is an Elder of the Mattagami Nation. The pair attempt to
draw parallels between classical systems of virtue ethics and the Ojibwa narrative
of the Seven Grandfathers, a fable with the central aim of transmitting the
community’s moral compass from one generation to the next. Kotalik & Martin
hope this exercise will show that aboriginal and mainstream bioethical
frameworks are indeed, to quote First Nations intellectual Leroy Little Bear,
“jagged worldviews colliding”. They share parallels, but they are far from
perfect complements. Real work must therefore be done to smooth the contact
point between them.</span></span></div>
<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif; text-indent: 0.5in;">Kotalik
& Martin make a provocative argument, but they paint a hazy picture of what
this work entails. They doubt the possibility of an “aboriginal bioethics”, but
they do speak of an “ethical framework” for the provision of healthcare in
indigenous communities along the lines of what has been achieved in human research.</span></div>
<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif; text-indent: 0.5in;">What
would this look like? Well, some of the groundwork might already have been laid.
Narrative bioethics, which has gained increasing traction in recent years, finds
common ground with the oral traditions of many indigenous peoples by framing
clinical ethical dilemmas with the devices of story. Communitarianism has also grown
in popularity amongst bioethicists, paralleling the unbroken continuum between
individual and community important to many aboriginal societies.</span></div>
<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif; text-indent: 0.5in;">With
these intellectual currents in place, an indigenous bioethics may or may not be
possible. However, one thing is certain: it is only with the leadership of
aboriginal communities articulating their vision of ethical healing that we’ll
find out.</span></div>
<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif; text-indent: 0.5in;">Gaelen Snell </span></div>
Stuart Renniehttp://www.blogger.com/profile/08848432130984308773noreply@blogger.com17tag:blogger.com,1999:blog-12833567.post-20921705811910255882017-06-20T11:20:00.000-04:002017-06-20T11:20:35.718-04:00Guest Blogger: Introducing Gaelen Snell <div class="MsoNormal">
<span style="font-family: inherit;">It has been some time since my last posting. Of course, this
is not due to their being a shortage of bioethics challenges related to
developing countries. There is never a shortage of that. Rather, a number of
research and training projects have pulled me away from my usual late night
musings. I will get back to it. Fortunately, there is also some help on the
way.</span></div>
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<span style="background-color: white; color: #212121;"><span style="font-family: inherit;"><b>Gaelen
Snell</b> is currently finishing off his Bachelor of Science degree (History and
Philosophy of Science plus pre-med studies) at the University of British
Columbia, Vancouver, Canada. This comes on top of his Bachelor of Art in
Political Science obtained at the L'Institut d'Etudes Politiques de Paris.
Gaelen has long been interested in health promotion in resource poor settings
(including those located within the ‘developed world’) and is planning a career
in humanitarian medicine. Gaelen will be contributing posts to this blog from
time to time, as the spirit moves him. </span></span></div>
<div class="MsoNormal">
<span style="background-color: white; color: #212121;"><span style="font-family: inherit;"><br /></span></span></div>
<div class="MsoNormal">
<span style="background-color: white; color: #212121;"><span style="font-family: inherit;">Welcome
Gaelen!</span><span style="font-family: "segoe ui" , sans-serif; font-size: 11.5pt;"><o:p></o:p></span></span></div>
Stuart Renniehttp://www.blogger.com/profile/08848432130984308773noreply@blogger.com82tag:blogger.com,1999:blog-12833567.post-26871344480801602142017-04-22T15:48:00.002-04:002017-04-22T17:16:56.401-04:00A more ethical form of HIV criminalization HIV has been criminalized throughout the history of the epidemic, or to be more exact, people living with HIV and their behaviors have been a persistent focus of criminal law. This was undoubtedly due in part to the fact that HIV initially was untreatable and infection (for the vast majority) spelt death. It was terrifying. But it wasn't just an understandable public health reaction. Criminalization is not necessarily a wise way of controlling an epidemic, as it can be counterproductive, driving underground persons potentially subject to the laws. And there is no way of getting around that those disproportionately affected by HIV (especially in the USA), were considered 'undesirables' by many in the public and those leaders they voted for. Criminalization also reflected a moral panic against homosexuals and injection drug users. So, because it was not really based on solid public health principles or scientific evidence in the first place, it is unsurprising that states made laws covering actions highly unlikely to lead to transmission (like spitting or oral sex), fail to take the use of new prevention technologies (PreP, use of antiretrovirals) into account, and often don't take into consideration the intention to cause harm. What is perhaps more surprising (and depressing) is that many of these laws <a href="https://www.poz.com/article/lgbt-report-looks-hiv-crime-laws-across-nation">are still on the books</a>. <br />
<br />
I am thinking that HIV criminalization should not be abolished, but pointed in a better direction. Let me back up. For a few years now, I have been working on a NIH-funded project on the <a href="http://searchiv.web.unc.edu/">social and ethical dimensions of HIV cure research</a>. In the context of that project, we have been confronted with numerous cases of people claiming they have found a cure for HIV. Such claims originate from all over the world, but Africa would likely be leading the pack, if anyone was counting. (Just set up a google alert with "HIV cure" and you will see what I mean) The President of the Gambia, Yahya Jammeh, claimed his home-brewed concoctions cured HIV, but his ex-patients (of those still living) <a href="http://www.aljazeera.com/video/news/2017/03/gambia-hiv-patients-recount-herbal-treatment-jammeh-170301113744385.html">aren't doing so well</a>. But that is just one example. It is <a href="http://www.politifact.com/global-news/article/2016/jul/20/roundup-fake-aids-cures-angel-zapper-garani-mw1-to/">hard to keep up</a>. This month, a Kenya politician, Harry Kombe, claimed that he can cure early-stage HIV with reflexology. And a whole bunch of other things, including helping a <a href="http://www.nation.co.ke/video/1951480-3887124-1vcbsyz/index.html">60-year old woman give birth</a>.<br />
<br />
So here is where criminalization could come in. Anyone who, without any verifiable evidence, makes a claim of curing HIV, should be subject to prosecution, if serious harms can be reasonably shown to result from that claim being made. If, for instance, the claims of a cure involve or result in people going off their antiretroviral treatment, and the health of such people is seriously compromised, then the behavior of the 'cure claimer' should be criminalized. This could be expanded to cover <a href="https://www.theguardian.com/world/2008/nov/26/aids-south-africa">the case of former South African President Thabo Mbeki and his HIV denialism</a>, where a Harvard study indicated that his unfounded claims led to 300,000 deaths. An evidence-based criminalization of baseless HIV cure claims would vast improvement, in terms of justice, over the forms of HIV criminalization we have now. For one thing, Mbeki would be in a cell, rather than being the <a href="http://ewn.co.za/2017/02/27/thabo-mbeki-inaugurated-as-unisa-chancellor">new chancellor</a> of the University of South Africa.<br />
<br />
<br />Stuart Renniehttp://www.blogger.com/profile/08848432130984308773noreply@blogger.com22tag:blogger.com,1999:blog-12833567.post-31608007690351580442016-11-22T13:35:00.000-05:002016-11-22T13:36:05.621-05:00Global health porn: the case of Extreme DoctorsThe last few years have seen a growing interest in the ethics of short-term medical missions in the developing world. Global health initiatives and programs in many universities often involve such missions, where medical students or faculty travel to a faraway lands (relatively resource-constrained, with high disease prevalence and fragile health infrastructure) and provide certain medical services, for awhile. These missions certainly enhance the prestige and attractiveness of Western medical institutions and schools of public health, and can improve the CV's of those who participate in them. But those working in the field know such missions, particularly when embedded in longstanding partnerships, can also do some good. They also know that such missions can raise a number of serious ethical challenges that need to be addressed in advance, carefully thought through and continuously managed.<br />
<br />
These ethical challenges include: students or doctors practicing beyond their competence; inadequate follow-up care for interventions that are provided, particularly for chronic conditions; disruption of local health systems and patient expectations; lack of correspondence between services provided and local health priorities; cultural clashes between Western views of medical need and local conceptions of health and disease. <a href="https://www.ghdonline.org/uploads/Short-Term_Medical_Missions_Voluntourism_Global_Health_Readings.pdf">And so on</a>. Further, since medical care is being dispensed by wealthy individuals and organizations to patients and communities that are relatively poor, questions about exploitation are never far away: who really benefits, or benefits the most, from these 'exchanges'? How can such missions, however well-intentioned, avoid taking unfair advantage of the vulnerable? Efforts have been spent on developing ethical guidance, and while there are best practices for short-term global health missions out there, all this is clearly a work in progress. The background of massive health (and other) inequalities in the world makes the ethical conduct of short-term global health initiatives a complex, uphill battle.<br />
<br />
There is another way of treating that background and viewing those challenges: as a basis for entertainment. <i><a href="http://www.extremedoctors.tv/about-us/">Extreme Doctors</a></i> is a show currently in production by the Lifetime TV Channel. As for the show's premise, I will let their website do the talking:<br />
<br />
<span style="background-color: white; color: #343434; font-family: "open sans" , sans-serif; font-size: 13px;">In season one our teams will converge on an underserved country in Central Africa that is known for its extreme contrasts from breath taking beauty to life threatening poverty. As soon as their boots hit the ground they assess needs and get to work. They only have 21 days to treat countless patients and try and make an impact. The long hours, frustrations, overwhelming need and third world conditions will test their skills and pull on their every emotion.</span><br />
<br />
The show is presumably being shot in Zambia at this moment, and while no one can judge its content yet, the material posted on its website already runs the gamut from cringeworthy to appalling. The show's drama solidly centers on the medical professionals, plucked from their privileged American environments, and flown (likely premier class) to provide medical care to seriously messed up other-cultured remote people in adverse conditions (where, as one clip notes, access to a hair dryer is not guaranteed). They are interviewed before their medical mission, where they try to anticipate the magnitude and grandeur of their own personal sacrifices, and gird themselves for the mental toughness needed to 'get them through the sadness' of dealing with sick/poor Zambian people. (Suffering people can be such a downer.) One of the doctors even explicitly acknowledges that he is not prepared for the challenges ahead, apparently because that is part of the fun, though presumably will be less fun for his patients.<br />
<br />
In typical 'reality television' style, the show plans to have medical professionals tell their own homespun personal stories, gossip about the other doctors and nurses, and express their 'fish-out-of-water' reactions. It's clearly all about them. The Zambians and their communities will seemingly play bit parts, as the suffering bodies to work 'medical miracles' on, and to provide occasions for foreigners to vent their emotions. But, as one of the doctors puts it, Africans accept death, so maybe the stakes are not that high, after all. Oh, and the flora and fauna of Africa is very photogenic, which helps to lighten things up a bit. But, you might ask, what happens after the medical mission is over? How is the impact of their 21-day intervention measured? What do locals make of these 'medical heros' helicoptering in, and whining about their feelings on camera, then heading back to their 6-figure incomes? From the entertainment perspective, those ethical questions are likely to be considered boring, and therefore irrelevant. For those concerned about the ethics of short-term medical missions, watching <i>Extreme Doctors</i> could be akin to watching a crime scene.<br />
<br />
What are the likely effects of such a show? In the best case scenario, there are no grave effects, because the show is cancelled after viewers become horrified by this pretentious, neocolonial monstrosity. Or the show continues on, reinforcing the <a href="http://www.theatlantic.com/international/archive/2012/03/the-white-savior-industrial-complex/254843/">white savior complex</a>. Or the show inadvertently manages to de-legitimize all short-term global health missions, including ethically sound ones. From an ethical point of view, it is hard to see a good case scenario. Raising awareness of global health inequality? Please. Stuart Renniehttp://www.blogger.com/profile/08848432130984308773noreply@blogger.com16tag:blogger.com,1999:blog-12833567.post-18801126208717701922016-10-22T16:08:00.001-04:002016-10-22T16:11:52.920-04:00Bioethics in China: not wild, but not tame eitherHere is a way to turn yourself into a hostage of fortune, in bioethics and elsewhere. It is to vigorously defend something against allegedly unfair accusations, while acknowledging you may not know all the relevant information about what you are defending. That position can, should inconvenient truths come to light, transform you into an advocate of the dubious.<br />
<br />
Case in point: back in July of this year, Douglas Sipp and Duanqing Pei wrote a comment in Nature entitled <a href="http://www.nature.com/news/bioethics-in-china-no-wild-east-1.20116">Bioethics in China: No Wild East</a>. In it, they defended Chinese research practices (particularly in regard to genomics research involving human embryos) against accusations of being morally cavalier, loosely regulated, and prey to corruption. According to the commentary, Chinese research has been given bad press about its practices that do not match up with regulatory and laboratory reality. Biomedical research, including highly sensitive studies, is being (or well on the road to being) conducted responsibly there, even to the extent that China has some lessons for the rest of the world in this respect. Probably some truth to it, but you know this will not end well.<br />
<br />
Earlier this month, China's State Food and Drug Administration (SFDA) <a href="http://www.iflscience.com/health-and-medicine/most-clinical-trial-data-china-fabricated/">disclosed</a> that after examining a year's worth of clinical trial (n = 1622) data, that up to a whopping 80% of said data was fabricated. According to the report, the fabrication in part took the form of deliberately underreporting harmful side effects and adverse events experienced by trial participants in order to gain the necessary safety approvals. The SFDA surmised that the motivation for the fabrication was financial: trying to get drugs to market faster than their competitors.<br />
<br />
You could of course say this is a victory for Chinese regulators who at least looked for, found and reported the research fraud (though what penalties will be levied, if any, is unclear). And certainly every country has its own struggles keeping biotechnological advances on the straight and narrow, particularly in the private sector. But it does complicate attempts to defend the ethical climate of research in China against perceived 'bad press.'<br />
<br />Stuart Renniehttp://www.blogger.com/profile/08848432130984308773noreply@blogger.com12tag:blogger.com,1999:blog-12833567.post-60274694045250449942016-09-03T00:32:00.003-04:002016-09-03T00:45:53.486-04:00Bioethics and its better selfRenee Fox is one of the most, if not the most, distinguished American sociologists alive. If anything, this makes the attention that she has devoted to bioethics and bioethics workers all the more surprising, because after all, how interesting or important ARE we as subjects? She clearly would not agree with my assessment. She has written a whole book on it (<i><a href="https://www.amazon.com/Observing-Bioethics-Renee-C-Fox/dp/0195365550/ref=sr_1_4?s=books&ie=UTF8&qid=1472872246&sr=1-4">Observing Bioethics</a></i>, with Judith Swazey), and recently <a href="http://www.ncbi.nlm.nih.gov/pubmed/27499484">published a talk</a> entitled "Moving bioethics toward its better self: a sociologist's perspective", where she clearly and unapologetically has gone from observing bioethics to prescriptively stating what bioethicists ought to be doing. Of course, people telling bioethicists what to do is nothing new. Some make a career out of lumping all bioethicists together and lambasting them as a band of heartless utilitarians <a href="http://www.evolutionnews.org/2016/09/bioethics_conse103112.html">promoting a culture of death</a>. Fox is a more astute and gentler critic. For one thing, she apparently thinks bioethics has a 'better self', and that it can be nudged in that direction.<br />
<br />
So where does Fox think bioethics is now, such that it needs a good nudge? First, its focus is narrow, concentrating on a relatively limited set of phenomena in biology, medicine and medical technology, particularly as they relate to the beginning and end of life. In understanding the ethical issues related to these phenomenon, bioethics goes back to the well of one particular value (autonomy) over and over again, to the neglect of other values like the common good, solidarity and social justice. The comfort zone of bioethics is the individual or interpersonal level of analysis: it appeals strongly to moral imagination (because you can imagine 'what you would do' in a certain case) as well as resonating with traditional American individualism. Ascending to a more macro level of analysis -- social determinants of health and political forces impacting health but lying outside medicine -- pull bioethics more outside its comfort zone. For similar reasons, global health ethics, and appreciating other ways of how ethics is conducted around the world, are still marginalized interests within bioethics. Fox is also underwhelmed by talk of an 'empirical turn' in bioethics, arguing that the field has not yet seriously stepped outside its academic haven and embraced the lived experiences of patients, researchers, patients and their families. Worse still, what is supposed to be the bread and butter of bioethics, debate and argumentation, is shot through with timidity. In her experience, Doctors without Borders has more vigorous discussion and self-examination than your average bioethics center. <br />
<br />
So what is the recipe for getting to a 'better self'? Fox does not spell it out, but you get the idea. Open up the range of topics as to what counts as a 'bioethics question'. Stop fixating on autonomy and make room for other values worth caring about. Get a passport, then use it. Don't skim a couple of articles from social science journals and think you now have a deep acquaintance with 'the facts'. And argue, dammit, rather than just pointing out problems and simply stating recommendations or 'points to consider'.<br />
<br />
Fox is worried about the current state of bioethics, because she believes it has an important social function. She is not worried about bioethicists being 'evil'. She is worried that they are is self-absorbed, tepid, and ineffectual. Stuart Renniehttp://www.blogger.com/profile/08848432130984308773noreply@blogger.com10tag:blogger.com,1999:blog-12833567.post-66620903912823904562016-07-24T08:20:00.001-04:002016-07-24T08:21:40.520-04:00Bringing good things to life? GE in AfricaWhen I am looking for information about health in developing countries that is not available in the usual media outlets, covering stories less spectacular than the outbreak of the latest infectious threat, I have sometimes turned to AllAfrica.com. Certainly in the past, you could find issues related to bioethics of regional and local concern, say nurses strikes or clean water insecurity. Turning to AllAfrica.com for the first time in awhile, and wandering over to the fancier-looking Health webpage, my eye fell on an <a href="http://allafrica.com/view/group/main/main/id/00044843.html">article</a> entitled "Our Generation Will See Healthcare in Africa on a Par With the Rest of the World." This is global bioethics click-bait.<br />
<br />
Turns out the article is written by the President and CEO of GE Healthcare. GE, or General Electric, is <a href="https://en.wikipedia.org/wiki/General_Electric">one of the biggest multinational corporations in the world</a> in terms of gross revenue and profitability. And the content of the article is basically about GE Healthcare's good works, or at least ambitious plans, in Africa. More specifically, GE Healthcare is spearheading an effort to increase access to medical diagnostics (mammograms, X-rays, ultrasound) and training local health providers to use them. The President/CEO does realize technology is not going to solve everything: "Sustainable Healthcare Solutions don't come in boxes. They come in partnerships. In understanding the root causes of a challenge. In wanting to do well while doing good."<br />
<br />
Pardon my skepticism. Diagnosis is a good thing, but this particular effort may increase the number of diagnosed conditions for which the patients may have no access to appropriate treatment or care. At best, it is a piece in a massive and complex puzzle. The idea too about the insufficiency of technology and the need for partnerships etc. isn't exactly new either, and past similar initiatives haven't bumped up the health indicators in a favorable direction much. That is because the 'root causes of a challenge' in this case come from outside the healthcare domain itself, the old social determinants of health. Since tackling those is typically unprofitable, as well as politically sensitive, it is hard to see why GE would have a dog in that fight. And bringing healthcare 'on par with the rest of the world'? Which part? Hopefully <a href="http://www.cnbc.com/id/100840148">not the part with the highest rate of personal bankruptcy</a> due to high healthcare costs.<br />
<br />
Furthermore, GE Healthcare is a 'premium provider' on AllAfrica. What this apparently means is that it has paid AllAfrica for the privilege of writing or commissioning glowing articles describing its African activities. GE even has <a href="http://allafrica.com/infocenter/GE_in_Africa/">its own website</a> embedded in the website. If nothing else, this allows the attentive reader to contemplate how GE's activities in general impact on the health of Africans. The article on <a href="http://allafrica.com/stories/201412040108.html">GE's expansion of its footprint in the oil and gas sector</a> in Nigeria is a nice place to start. But in the end, readers will have to look elsewhere than AllAfrica.com if they want balanced and critical information on the increasing penetration of Africa by multinational corporations, particularly those who downplay their profit motives and promise nothing but good.<br />
<br />
<br />
<br />Stuart Renniehttp://www.blogger.com/profile/08848432130984308773noreply@blogger.com16tag:blogger.com,1999:blog-12833567.post-56840558023328474432016-03-10T09:24:00.001-05:002016-03-10T09:32:42.620-05:00Is there an 'African bioethics'? <div class="MsoNormal">
Well, is there? There have been a number of published
attempts to isolate what is different about African ways of identifying,
analyzing and resolving ethical issues related to health and medicine. Usually
there is talk of African communitarianism, solidarity and Ubuntu, to be
contrasted with the typically ‘Western’ emphasis on personal autonomy. But as
time goes on, this whole narrative seems more and more contrived and out of
step with reality. We know autonomy has limits, and does not automatically
trump other considerations in cases of moral conflict. The stress on communal life and social harmony
in African morality has similarly been oversold: contemporary ‘African life’ is
not predominantly lived in villages led by traditional elders where communal
problems are resolved by palabre under a baobab tree. That image is becoming
increasingly quaint against the influences of colonialism and globalization,
increased urbanization, digital communication, and the subsequent fraying of
traditional community structures.</div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
A couple of recent articles probe into what an African
bioethics might mean. In <i>Developing World Bioethics</i>, <a href="http://onlinelibrary.wiley.com/doi/10.1111/dewb.12106/abstract">Gerald Ssebunnya argues</a>
that the pursuit of a distinctly African bioethics is basically a fool’s
errand. According to Ssebunnya, the whole idea that an African bioethics exists
– or ought to – comes from Africanist philosophy and the desire to distance
African philosophical thought from that of their past colonial masters and
oppressors. Unfortunately, he writes, that meant falling back on what he calls
‘ethno-philosophy’, which consists of two main activities: (a) unreflectively
recycling bits of common morality and (b) polemically talking about the nature
and need of African philosophy rather than actually doing it. His remedy for what
he calls this ‘sterility’ is for African bioethicists and other African
stakeholders to work on the foundational, conceptual underpinnings of
bioethics, and thereby contribute African elements to the ongoing global
discussion about what makes health-related policies and practices ethical or
unethical.</div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
The <a href="http://journals.cambridge.org/action/displayAbstract?fromPage=online&aid=9572304">article by Sirkku Hellsten</a> in the <i style="mso-bidi-font-style: normal;">Cambridge Quarterly of Healthcare Ethics</i> is about the
role of philosophy in global bioethics, but also touches on the notion of regional
flavors, like ‘African bioethics’. Using Henry Odera Oruka’s four types of
African philosophy, she distinguishes four ways of philosophizing in bioethics
worldwide: ethnophilosophy, philosophic sagacity, ideological philosophy, and
professional philosophy. She makes a good attempt at describing the strengths
and weaknesses of them all (and has the good grace to keep calling the first
three 'philosophy'), but really, only professional philosophy contains something
universal: the critical use of reason in examining and developing arguments. That
is, and should be, the philosophy behind global bioethics. Hellsten seems undeterred
by the fact that this universal method historically originated from the
European Enlightenment, or that the method is known to be vulnerable to
influence by cultural factors (or as she calls them, ‘biases’).</div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
Where does this leave African bioethics? One option is that Africans keep producing bioethics informed by philosophical approaches Ssebunnya (and probably, in her heart of hearts, Hellsten) considers 'sterile.' Another option is that Africans are
paradoxically meant to double-down on their Western philosophy, rather than
avoid it, in order for African contributions to global bioethics to be born. Maybe this is where these two authors are going. Apply
‘universal method’ to African circumstances, stir. Will the resulting
concoction be, in some way, African? </div>
<div class="MsoNormal">
<o:p></o:p></div>
Stuart Renniehttp://www.blogger.com/profile/08848432130984308773noreply@blogger.com17tag:blogger.com,1999:blog-12833567.post-7306252984269858342016-02-03T10:31:00.002-05:002016-02-03T10:33:16.687-05:00Watching the retractions<a href="http://retractionwatch.com/">Retraction Watch</a> is a website devoted to information about, well, retractions: when a scientific or scholarly journal withdraws an article which it had previously published, for one or another reason (fraud being the most damning). The site can interest bioethics workers for obvious reasons: not just that it is a watchdog for scientific integrity, but also that it is your one-stop-shop for accusations of potentially unethical scientific behavior.<br />
<br />
Recently, the tables were turned: a bioethics article was <a href="http://link.springer.com/article/10.1007/s11673-015-9654-4">retracted</a>. In fact, it was an article that <a href="http://retractionwatch.com/">this blog mentioned back in 2015</a>. Chattopadhyay et al.'s "Imperialism in bioethics: how policies of profit negate engagement of developing world bioethicists and undermine global bioethics" looked at online journal access, and concluded that a number of bioethics journals were inaccessible to middle- and low-income researchers via prominent open-access initiatives (WHO's Hinari, Pub Med Central). These broad claims were factually incorrect. You could call this the predictable consequence of the 'empirical turn' in bioethics: if you emulate empirical methods, and generate empirical data to support ethical arguments, you are open to retraction when the facts aren't right. So be it.<br />
<br />
The <a href="http://retractionwatch.com/2016/01/29/an-innocent-mistake-leads-to-bioethics-article-retraction/">discussion and comments</a> on the case in Retraction Watch are worth taking a look at. For my part, I sympathize with the general claim that those in developing countries face serious challenges entering the bioethical 'conversation of mankind.' The roots of the problem likely run deeper than open-access: if you don't have good English, or access to computers, or computers with reliable internet, or there is no hint of 'bioethics' in your educational institutions, or a burning interest in bioethics makes you an economical trainwreck and so on. To make these sort of claims stick, more empirical research is needed. As it should be.<br />
<br />
For my part, I have decided not to retract my blog piece on the original article, but instead direct the readers (all five of them) to this post and hence back to Retraction Watch. Lesson learned: you can't assume that peer reviewers have thoroughly checked the methodology of an article, and when the conclusions of an article cohere strongly with your own experiences, look out. Stuart Renniehttp://www.blogger.com/profile/08848432130984308773noreply@blogger.com420tag:blogger.com,1999:blog-12833567.post-89998574072009777432015-12-17T21:38:00.000-05:002015-12-18T08:33:56.063-05:00Tirage with terrorists<span style="font-size: medium;"><span style="font-family: "times";">The Israeli Medical Association (IMA) apparently
changed their position on triage, and it did not go down well. According to
<a href="http://www.jewishpress.com/news/breaking-news/israeli-medical-association-doctors-must-treat-the-worst-injury-first-including-terrorists/2015/12/16/">media reports</a>, the new rules would require emergency medical personnel to treat
all those harmed in a terrorist attack according to severity of injury,
including those who caused the harm. I would quote the exact words of the IMA
position paper, but it seems to have been taken down from <a href="http://www.ima.org.il/Eng/ViewCategory.aspx?CategoryId=4545">their website</a>, amid the
ensuing controversy. I would also quote directly from the comments section of
some Israeli newspapers, but bloodlust is not everyone's
thing. </span><span style="font-family: "times";"><o:p> </o:p></span></span><br />
<span style="font-family: "times"; font-size: medium;"><br /></span>
<span style="font-size: medium;"><span style="font-family: "times";">The prior guidance on triage in such situations
seemed to be influenced by rabbinic principles to the tune of 'charity begins
at home'. In that case, you treat your own injured people first, and only those
who are 'other than your own' or ‘opposed to your own’ afterwards. The new
guidance removed that reference, rendering it more cosmopolitan, where
ethnic/national/perpetrator/victim distinctions are irrelevant, and suffering
humans in such situations are to be treated by physicians purely according to
medical criteria. Opponents of the change find it outrageous that a terrorist
could potentially be treated ahead of one of his/her less severely injured
victims. </span><span style="font-family: "times";"><o:p> </o:p></span></span><br />
<span style="font-family: "times"; font-size: medium;"><br /></span>
<span style="font-family: "times"; font-size: medium;">Of course, the larger background is the
longstanding Israeli-Palestianian conflict, including who gets called a
terrorist when civilians are put in harm's way or killed to further political aims, and who does
not. But even leaving that to one side, the old position on triage was already controversial.
The 'charity begins at home' approach turns the physician into an instrument of
(certain currents within) the Israeli state, where doctors are instructed to
perform political triage with medical resources. This approach may not even be
wise politically, given that dead people are harder to gain information from,
and that it implies that IDF members should receive likewise (non-)treatment
from Palestinian physicians in casualty situations. It would also seem to imply
that Israeli physicians should treat even the most minor physical injury of
'one's own' above the injuries of the one(s) who caused the harm, no matter how
severe. That implication would undoubtedly appeal to angry posters in comments sections, some of whom say that injured terrorists should simply die, and
doctors on the scene should not prevent, or perhaps should even hasten, their
death. One can understand the rage evoked by the killing of innocent civilians,
but what kind of doctor does that? </span><br />
<span style="font-size: medium;"><span style="font-family: "times";"><span style="mso-spacerun: yes;"><br /></span></span><span style="font-family: "times";"><o:p> </o:p></span><span style="font-family: "times";">In any case, the IMA is responsible for clarifying its current position and
its ethical rationale. It will also need to state how medical professionals
will be protected on the scene if they are to follow any new cosmopolitan
guidelines, considering how violently some are opposed to it. </span></span><br />
<br />Stuart Renniehttp://www.blogger.com/profile/08848432130984308773noreply@blogger.com34tag:blogger.com,1999:blog-12833567.post-89458868660983049562015-12-11T22:48:00.001-05:002015-12-11T22:56:02.299-05:00Research ethics during medical disruption A couple years ago, I experienced first-hand the effects of political turmoil on research. My university was conducting epidemiological research involving sex workers in Antananarivo, Madagascar. Special clinics were being piloted for this stigmatized, hard-to-reach and vulnerable population. Then the <a href="https://en.wikipedia.org/wiki/2009_Malagasy_political_crisis">political crisis of 2009</a> hit. Everything ground to a halt, including much of the activity in the hospitals where the research was taking place. The sudden upheaval in the routines of everyday life caused much confusion and disarray: what now?<br />
<br />
A <a href="http://jme.bmj.com/content/early/2015/10/15/medethics-2013-101490.abstract">new publication in the Journal of Medical Ethics</a> by House et. al. is therefore very welcome, because it covers some neglected ground. In the rare case that bioethicists discuss ethical challenges within politically unstable contexts, they tend to concentrate on the reliable delivery of health care. Instead, this article focuses on the conduct of health research when social life gets gnarly, and more specifically when medical services are disrupted, based on the authors' experiences in Kenya. The authors make a useful three-way distinction between the ethics of not starting research, stopping it once it has started, and keeping on going in the face of communal strife.<br />
<br />
The authors argue that the ethics of not starting research, and continuing it once it has started, are different. If the political upheaval is so disruptive that ethical standards of research cannot be upheld, research should wait. But an ongoing study may involve serious commitments and expectations, a relationship of trust between researchers and communities, and research participants may benefit from research-related interventions. Stopping an ongoing study requires deliberation with the local community and a careful collaborative weighing of options and trade-offs.<br />
<br />
One shortcoming of the discussion is its strong focus on clinical, biomedical research, where data collection is closely bound up with the provision of health care. Not all research one can imagine during a political crisis is like that. Anthropologists and political scientists -- who unlike physician-researchers do not have a role-related duty to care for patients -- may in fact jump at the chance to study what goes on during periods of political turmoil, and it is not clear that the biomedical framework of House et. al. captures the kinds of challenges they might have, or if their recommendations are applicable to them. <br />
<br />
Connecting the recent Ebola crisis to this article reveals a certain tension. According to this House et. al., would research during the highly disruptive Ebola crisis be permissible or not? The answer seems to be: yes and no. At some points, House et. al. rule such research out as unethical: "While research has the potential to benefit the health of populations, the risks overall are too high to start research during medical care disruption. The prudent course is to wait until after resolution of these episodes when ethical standards can be met, the safety of patients and research subjects assured, and the likelihood of completing a study is maximized." However, the authors later seem to build in a loophole: "... if the aims of the study are of particular importance during times of medical care disruption such as studies that address how to optimise healthcare during times of disruption, it may shift the balance of decision-making in favour of starting or continuing research." That would, under a charitable interpretation, rule in favor of research-during-Ebola-like-outbreak.<br />
<br />
We seem to be still in two minds: do we categorically state that conditions during political upheaval simply make responsible conduct of research impossible, or do we permit research that might be useful and could not be conducted other than in those non-ideal conditions? The House et. al. article may not answer this question, but it has helpfully opened lines of inquiry into ethical questions that arise all to often in research in developing countries. Stuart Renniehttp://www.blogger.com/profile/08848432130984308773noreply@blogger.com68tag:blogger.com,1999:blog-12833567.post-92131040511381331692015-08-02T01:17:00.000-04:002015-08-02T08:58:57.022-04:00Pinker tells bioethics what its new moral imperative is, or not Steven Pinker has <a href="https://www.bostonglobe.com/opinion/2015/07/31/the-moral-imperative-for-bioethics/JmEkoyzlTAu9oQV76JrK9N/story.html">written a provocative opinion piece today</a> in the Boston Globe about bioethics. It was apparently sparked by a new technique for editing genomes, namely <a href="http://www.nytimes.com/2014/03/04/health/a-powerful-new-way-to-edit-dna.html">CRISPR-Cas9</a>, and the social, political and ethical responses to this novel biotechnology. In a nutshell, Pinker states that promising new biotechnologies for improving human health like CRISPR-Cas9 should be aggressively pursued, and " ... the primary moral goal for today's bioethics can be summarized in a single sentence. Get out of the way." If bioethicists are not getting out of the way, they are, um, in the way. And if they are in the way, then they are blocking the bonanza of benefits that science could produce. With horrifying results.<br />
<br />
My first reaction was: how is this new bioethics skill taught? Should there be classes that teach it in a stepwise manner, i.e. where you first learn not to butt in, then how to just step a bit aside, followed by somewhat getting out of the way, and culminating in totally screwing off? What would the syllabus look like? Wouldn't avoiding bioethics class altogether be a sign of success?<br />
<br />
But seriously, how does Pinker get to this conclusion? Answer: a number of shaky assumptions. The first assumption is that health outcomes are primarily driven by biotechnological advances, rather than (say) non-biomedical driven changes in the social determinants of health. That first and controversial assumption is needed in combination with a second one about bioethics, i.e. thwarting important research is the primary goal of bioethics as it is currently practiced. That view of bioethics comes in the form of a massive, bloated straw man:<br />
<br />
<i>A truly ethical bioethics should not bog down research in red tape, moratoria, or threats of prosecution based on nebulous but sweeping principles such as 'dignity', 'sacredness', or 'social justice'. Nor should it thwart research that has likely benefits now or in the near future by sowing panic about speculative harms in the distant future. These include perverse analogies with nuclear weapons and Nazi atrocities, science-fiction dystopias like 'Brave New World' and 'Gattaca' and freak-show scenarios like armies of cloned Hitlers, people selling their eyeballs on eBay, or warehouses of zombies to supply people with spare organs. </i><br />
<br />
Well, yes, bioethics should not be insane. But maybe people just have less wacky short and long-term concerns about gene editing. Pinker brushes this aside too, saying that slowing down science even a little bit causes devastating harm (see first assumption), and since we can't reliably predict long-term implications of science anyway, why hold us back by discussing them? So old bioethics of constraint and caution to the side! Let biotechnological research be free of impediment, so we (in the better off countries, mostly) can feast on its benefits! But whoa, wait a minute. He also writes:<br />
<br />
<i>Of course, individuals must be protected from identifiable harm, but we already have ample safeguards for the safety and informed consent of patients and research subjects. </i><br />
<br />
Where do those protections come from? Old bioethics, the kind that does not step out of the way. And although those protections are (more or less) in place, it is not insane and irresponsible to discuss research on human subjects involving gene editing in order to get some grip on what the 'identifiable harms' might be, what informed consent should involve, and what safeguards would be appropriate. And it is not just silly bioethicists that worry these sorts of things: the call for a moratorium <a href="http://www.nytimes.com/2015/03/20/science/biologists-call-for-halt-to-gene-editing-technique-in-humans.html?_r=0">was made by the scientist</a> that invented CRISPR-Cas9 in the first place.<br />
<br />
On closer inspection, what is Pinker saying? Not a lot. Science is awesome, when it leads to good things; irrationality is irrational. So as far as this opinion piece goes, it might have been better to get out of the way.<br />
<br />Stuart Renniehttp://www.blogger.com/profile/08848432130984308773noreply@blogger.com12tag:blogger.com,1999:blog-12833567.post-16758747162087210492015-08-01T01:12:00.000-04:002016-02-03T10:25:40.509-05:00Imperialism and access to bioethics journals Let's say that bioethics is about understanding and managing conflicts of value related to health and care for health. Call them moral challenges. Let's also say that there is something at stake in these challenges, i.e. that they could be understood and managed for better or for worse, where the 'better' and the 'worse' could impact on human lives. Let's say too that these challenges are universal, i.e. that no society or community is immune from them, even if there are differences between what constitutes 'health', 'care for health', 'values', and how challenges are seen to be understood rightly (or wrongly) and managed well (or badly). In this generic sense, bioethics is universal. Now what if access to bioethics, as a tradition of thought, was largely limited to practitioners in the richer, industrialised countries of the world? It seems unjust that developing countries would be saddled with the moral challenges of health and medicine, without (presumably) also having resources to help make sense of and deal with them in reasonable ways.<br />
<br />
This is the central complaint of Chattopadhyay, Myser and De Vries in a recent article in the Journal of Bioethics Inquiry, fetchingly entitled <i><a href="http://link.springer.com/article/10.1007/s11673-015-9654-4">Imperialism in Bioethics: How Politics of Profit Negate Engagement of Developing World Bioethicists and Undermine Global Bioethics</a></i>. The authors describe how policies by many publishers of bioethics journals making it extremely difficult for aspiring bioethicists in developing countries to engage with the existing (and past) literature. While there are initiatives to improve global access to existing bioethics journals (like <a href="http://www.who.int/hinari/en/">HINARI</a>), and there are some open access journals related to bioethics (like <a href="http://www.biomedcentral.com/bmcmedethics">BMC Medical Ethics</a>), and you could always write to authors and ask them for copies, these forms of access are inferior to the kind on offer in certain academic institutions in America and Europe. The great powers feast, the others get the crumbs.<br />
<br />
The situation of inequality of access to bioethics literature is fairly well-known. What makes <i>Imperialism in Bioethics</i> especially interesting are the ethical implications it tries to draw. For example, the authors state that poor access to bioethics resources make training initiatives aiming at 'capacity building' in developing world countries (like <a href="http://www.fic.nih.gov/programs/pages/bioethics.aspx">Fogarty</a> and <a href="https://med.kuleuven.be/eng/erasmus-mundus-bioethics">Erasmus</a> programs) illusory. How can capacity be developed if there is no ongoing, sustainable access to bioethics as a tradition of thought? Another implication is that, if there continues to be limited global access to bioethics resources, then bioethics will continue to reflect largely 'Western' assumptions, values, preoccupations and mindset. What will continue to be excluded are alternative forms of health and care for health, and alternative ways of conceiving and dealing with the conflicts related to them. For the authors, it is not just sad that this situation turns bioethics into a Western echo chamber, despite its global pretentions. They call it an intellectual, cultural and moral genocide of non-Western traditions, " ... varieties of sociocultural experience, theorizing, and moral visions of life and medicine that have evolved over eons."<br />
<br />
I am not sure that all the implications stick at full strength. Access to bioethics literature certainly matters. But there are substantive obstacles to local bioethics practice in developing countries even if information access problems were to be overcome. One obvious one is that aspiring bioethicists often have nowhere to work in those countries, or at least, no where to work <i>as bioethicists</i>. Local institutions often do not value bioethics enough to fund it, probably because they are too busy tackling all the other fallouts of inequality. Convincing struggling educational institutions that some (or any) of the medical curriculum should be devoted to bioethics can be hair-raising.<br />
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As usual, global inequalities lead to uncomfortable ironies. It is painfully ironic that <i><a href="http://onlinelibrary.wiley.com/journal/10.1111/(ISSN)1471-8847">Developing World Bioethics</a></i>, owned by Wiley-Blackwell -- is not accessable through PubMed Central or HINARI. It is somewhat ironic for the authors to complain about lack of access to a tradition of bioethics they otherwise describe as parochial, decontextualised and hence to some extent useless to the rest of the world. It is really ironic that the article is -- as the authors acknowledge -- published by Springer, whose policies are precisely those that they criticize. And to top it off, Springer seems to have made an exception to their policy for this particular article: everyone (with internet) can read it without paying the usual $39.95. <br />
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<b>NOTE: the article discussed in this blog piece has <u>retracted</u>. For more info, see my blog piece of February 3, 2016. </b><br />
<br />Stuart Renniehttp://www.blogger.com/profile/08848432130984308773noreply@blogger.com152tag:blogger.com,1999:blog-12833567.post-35953531685436286772015-07-23T22:59:00.000-04:002015-07-23T23:11:04.544-04:00Postmodernity and global polio eradication Polio is getting closer to being eradicated. If it happens, it would join (along with <a href="https://en.wikipedia.org/wiki/Smallpox">smallpox</a> among humans and <a href="https://en.wikipedia.org/wiki/Rinderpest">rinderpest</a> among cattle) that very rare class of pathogens that have been taken literally out of circulation by conscious human efforts. That sounds good, but in the case of polio it also shows just how long it takes medical advances to deeply penetrate resource-limited and politically volatile settings: a safe and effective vaccine has already been around for half a century. In any case, due to the collective efforts by charitable organizations, civil society, government and religious leaders, <a href="http://www.voanews.com/content/nigeria-beats-polio/2872818.html">Nigeria is getting nearer</a> to being rid of polio, and tomorrow will mark a year since a case of polio has been diagnosed there. The remaining holdouts are Pakistan and Afghanistan. But potential threats to polio eradication may lie elsewhere, where you rationally would expect it less.<br />
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Like California. According to the California Department of Public Health, over 60% of children in the state have <a href="http://www.mercurynews.com/health/ci_27588369/marin-vaccine-skipping-raises-concerns-polio-resurgence">not received the full suite of vaccinations</a>. This is partly a case of being victims of their own success: Americans have little experience of what it is like to be prey to infectious agents precisely because vaccines have worked so well on so many of them. It is a stance you have the luxury of taking from a position of relative privilege. But it is partly due also to a culture of <a href="http://www.slate.com/articles/health_and_science/medical_examiner/2015/04/california_anti_vaccine_movement_politics_wealth_bob_sears_and_robert_f.html">gossip, suspicion and kneejerk mistrust of medical authority</a>, and hence also from a position of ignorance. If vaccines are the product of Enlightenment faith in reason and science to improve society, rejection of vaccines -- when not itself based on sound reasoning and evidence -- is regression into a pre-scientific state where life was nasty, brutish and short. Privilege and ignorance is a toxic combination, and some people have to (re-)learn the hard way.Stuart Renniehttp://www.blogger.com/profile/08848432130984308773noreply@blogger.com142tag:blogger.com,1999:blog-12833567.post-77922063778493657592015-07-21T01:12:00.000-04:002015-07-21T01:12:34.986-04:00The bioethics of austerity One of the more depressing aspects of the crisis in Greece is the cartoonish way the plight of the Greek people has been portrayed. It is as if ordinary Greeks had all taken out massive and reckless loans, and when asked to pay them back, they stubbornly refused. The nerve of such people! Do they want money for nothing? Can't they pay off their debts like us, i.e. hard-working sensible people? How lazy and irresponsible of them.<br />
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Africans may view all this with a sense of <i>d</i><span lang="EN-US" style="font-size: 12pt;"><i><span style="font-family: Times, Times New Roman, serif;">è</span></i></span><i><span style="font-family: Times, Times New Roman, serif;">ja</span> vu</i>. In the years after independence, the ruling class of African countries brought their economies into debt, while rulers enriched themselves from revenue generated by the selling off of their natural resources to the developed countries in the North. In the 1980's and 1990's, the collection agencies of the international creditor community (i.e. the World Bank and the IMF) imposed 'structural adjustment programs' that involved reducing expenditures by the public sectors -- especially education and health -- opening up markets to foreign investment and establishing debt repayment schemes. This was austerity <i>avant la lettre</i>, whose effects in Africa were largely catastrophic and are still felt right up to this day. In this way, Africa was a laboratory for a new, 'bloodless' way of dominating and exploiting other countries, not by armed conquest, <a href="http://www.amazon.com/Governing-Debt-Semiotext-Intervention-Series/dp/1584351632/ref=pd_sim_14_1?ie=UTF8&refRID=0267R4DJGVFXD7QV6HSX">but by debt</a>. Debt in this geopolitical context is not like the debt you incur when you voluntarily take out a loan to buy (say) a car. No ordinary African citizen voluntarily asked for despots and kleptocrats to siphon off national resources, run their country deep into the red, and then agree to repayment terms and conditions that gut their schools and hospitals. Africans are familiar with European powers doing this to them, and accusing them of laziness in the process. Europeans doing it to one of their own: now <i>that</i> is new.<br />
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Just like the African case, the Greeks are getting hit ... <a href="http://www.theguardian.com/world/2015/jul/09/greek-debt-crisis-damage-healthcare-hospital-austerity">right in the health sector</a>. Crumbling infrastructure, doctor and nurse burnout and brain drain, use of cheap but unsafe materials, shortages of medical supplies, increasing inability of patients to pay for services: all the classic symptoms of austerity health care. The imposition of austerity will be predictably associated with avoidable morbidity and mortality -- and it is avoidable because austerity is a political construct, not a natural event. If the more powerful countries want to bail out or provide debt relief to certain countries or institutions, they can and they have. So they are at least partly responsbility for those consequences when they decide not to, both in the old African case and the new Greek one. Stuart Renniehttp://www.blogger.com/profile/08848432130984308773noreply@blogger.com7tag:blogger.com,1999:blog-12833567.post-21878216112304155702015-04-24T11:50:00.000-04:002015-04-24T11:57:22.765-04:00Penile transplants and ritual male circumcision in AfricaIt should not be going to too far out on a limb to say that ritual male circumcision is not, and never has been meant to be, a medical intervention. Certainly in sub-Saharan Africa, where it has generally been understood as part of a larger rite of passage from boyhood to manhood, questions of safety, hygiene, pain relief or psychological trauma are typically not concerns central to the ritual. If they were, the use of unsterile instruments by non-surgeons on the un-anesthetized would have led to the disappearance of the practice long ago. The ritual is about risk, not safety; it is about testing an initiate's response to fear, not making the youth feel comfy. And what is more fearful that the threat of a sharp instrument being brought to bear on your private bits? One can be appalled by the practice, but you have to at least acknowledge that it is not an attempt to do the same thing as medical circumcision, except more primatively and with higher complication rates. It has unsafe practices partly because it serves a whole other purpose.<br />
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Nevertheless, it is hard to say that penile amputation or death are just the price you pay for ritual male circumcision, and those who think otherwise should just man up. Are you culturally ignorant if you care about and want to protect those who are harmed by traditional circumcision? Are you culturally insensitive if you want to change the practice to reduce harm to persons? One interesting development related to the issue has been <a href="http://www.washingtonpost.com/news/to-your-health/wp/2015/04/21/for-victims-of-botched-circumcision-ritual-penis-transplants-offer-new-hope/">the announcement of the first penis transplant</a>. A nine-hour surgery by a South African surgical team late last year transplanted the penis of a dead donor to a young man who had lost his own member due to ritual circumcision complications. To barely-contained chuckles in news reports and the twitter-sphere, the patient enjoyed a rapid recovery, successfully putting his Johnson through its sexual paces only five weeks after surgery. Bad knifework corrected by better surgery, giving hope to all those harmed by ritual.<br />
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There are some puzzling and disquieting aspects to the story though. I suppose the first is that I never realized that you could donate your penis. Is this a checkbox on a form? The second is the question -- never answered in any news report that I saw -- whether the donated penis was itself circumcised. If it wasn't, this could be a first: the first man to be circumcised twice. But most of all I wondered: how many of those who suffer from penile amputation via ritual circumcision are in a position to afford a nine-hour operation? And how will having another man's penis play itself out in their communities? Will it be considered more or less strange than not having one at all? And to what extent is this surgical achievement an adequate response to the deaths and dismemberments of ritual initiates occurring each year, rather than showcasing what powerful medical institutions are able to do?<br />
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Prevention rather than treatment is probably the only realistic way to cut down on the morbidity and mortality associated with ritual male circumcision. The problem is that it is unclear how to minimize the harm associated with the practice without significantly altering its meaning. Probably no headway will be made until the adherents themselves (and not just outsiders) regard the deaths and mutilations as matters of deep moral concern, rather than something that just comes with the ritual territory.<br />
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<br />Stuart Renniehttp://www.blogger.com/profile/08848432130984308773noreply@blogger.com8