Saturday, October 22, 2016

Bioethics in China: not wild, but not tame either

Here 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.

Case in point: back in July of this year, Douglas Sipp and Duanqing Pei wrote a comment in Nature entitled Bioethics in China: No Wild East. 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.

Earlier this month, China's State Food and Drug Administration (SFDA) disclosed 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.

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.'

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Saturday, September 03, 2016

Bioethics and its better self

Renee 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 (Observing Bioethics, with Judith Swazey), and recently published a talk 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 promoting a culture of death. 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.

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.

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'.

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.

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Sunday, July 24, 2016

Bringing good things to life? GE in Africa

When 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 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 for the first time in awhile, and wandering over to the fancier-looking Health webpage, my eye fell on an article entitled "Our Generation Will See Healthcare in Africa on a Par With the Rest of the World." This is global bioethics click-bait.

Turns out the article is written by the President and CEO of GE Healthcare. GE, or General Electric, is one of the biggest multinational corporations in the world 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."

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 not the part with the highest rate of personal bankruptcy due to high healthcare costs.

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 its own website 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 GE's expansion of its footprint in the oil and gas sector in Nigeria is a nice place to start. But in the end, readers will have to look elsewhere than 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.

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Thursday, March 10, 2016

Is there an 'African bioethics'?

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.
A couple of recent articles probe into what an African bioethics might mean. In Developing World Bioethics, Gerald Ssebunnya argues 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.
The article by Sirkku Hellsten in the Cambridge Quarterly of Healthcare Ethics 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’).
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? 

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Wednesday, February 03, 2016

Watching the retractions

Retraction Watch 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.

Recently, the tables were turned: a bioethics article was retracted. In fact, it was an article that this blog mentioned back in 2015. 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.

The discussion and comments 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.

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.

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Thursday, December 17, 2015

Tirage with terrorists

The Israeli Medical Association (IMA) apparently changed their position on triage, and it did not go down well. According to media reports, 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 their website, amid the ensuing controversy. I would also quote directly from the comments section of some Israeli newspapers, but bloodlust is not everyone's thing.  

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.  

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? 

 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. 

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Friday, December 11, 2015

Research 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 political crisis of 2009 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?

A new publication in the Journal of Medical Ethics 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.

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.

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.  

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.

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.    

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