Imperialism 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.

This is the central complaint of Chattopadhyay, Myser and De Vries in a recent article in the Journal of Bioethics Inquiry, fetchingly entitled Imperialism in Bioethics: How Politics of Profit Negate Engagement of Developing World Bioethicists and Undermine Global Bioethics. 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 HINARI), and there are some open access journals related to bioethics (like BMC Medical Ethics), 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.

The situation of inequality of access to bioethics literature is fairly well-known. What makes Imperialism in Bioethics 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 Fogarty and Erasmus 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."

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 as bioethicists. 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.

As usual, global inequalities lead to uncomfortable ironies. It is painfully ironic that Developing World Bioethics, 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.      

NOTE: the article discussed in this blog piece has retracted. For more info, see my blog piece of February 3, 2016. 

Has global health become medicalised?

Many people have heard of ‘global health’. In fact, it is hard to get away from it, particularly on the medical side of college campuses, in health policy discussions, or the media when a newsworthy epidemic breaks out somewhere. Global health is generally code for (unfair) health disparities and the unhappy tendency of health crises walk or fly across national borders. Perhaps less familiar is the concept of ‘medicalization’. Roughly speaking, it is the process by which human problems are understood as (or ‘reduced to’) medical problems. For example, one could view diabetes as a purely medical problem, for which better treatments are needed, rather than (say) a condition implicating a host of social, political and economic factors, such as the low-cost of processed food, changes in work conditions and the structure of built environments. So what happens when you put ‘global health’ and ‘medicalization’ together?

Jocalyn Clark has written some intriguing exploratory pieces on the links between medicalization and global health in the online journal Global Health Action. Do global health initiatives tend to medicalize the problems that they set out to tackle? And if so, what effects does this process of medicalization then have? Certainly there is a tendency to seek technological (‘innovative’) solutions to health problems in developing countries, often with mixed results. To the extent that the determinants of poor and better health are social, political and economic, purely medical interventions are likely to have superficial impact. I wonder if there is also something else at play: not just medicalization, but the allure of objectivity and neutrality – think Red Cross -- associated with Western medicine. Coming into a developing country with medical interventions seems far less politically fraught than proposing large-scale changes to ways of life. So there is a tension between a major tenet of global health (that health is socially determined) and the political implications of trying to improve health globally. The tendency towards medicalization may paradoxically reflect a need to look for a ‘safe space’ for global health practice.

A raging epidemic of bioethical commentary

I don't think I have seen so much bioethics commentary about a single topic -- in such a short span of time -- since I got interested in the field. Talk about Ebola is spreading and multiplying far faster and wider than the virus. It is definitely flavour of the month, and as for how many infectious disease bioethicists there are out there, who knew?  Even the ones I thought were more into enhancement or face transplants or some other shiny object of bioethical curiosity are getting in on the action. Decent analyses are being written, it's not that. It is more about where they all were for the last decades, or even in the last years, when cholera, ebola, dengue, malaria and other (neglected) disease threats have been popping up all around developing countries. Does it really have to (frankly) affect a couple white folks from the North before it gets hot and happening? I already knew that Western media outlets are self-absorbed ambulance chasers but ...

OK, I am being overly harsh. I just hope there is more to the bioethics coverage than what-measures-are-appropriate-to-combat-spread-of-terrifying-disease-or-stop-it-from-getting-to-our-shores. The ethics of urgency, Ethics 911. Ebola's rise and spread in Western Africa is a symptom of what kind of shape those countries are in, not just their health care systems but the social and political circumstances in which those systems are embedded. Ebola can only thrive in messed up places. My prediction is that once Ebola has been contained, attention to the driving forces of poor health in developing countries will get as much attention from bioethicists as it generally gets. Plus ca change.

P.S. Now this is more like it ...

The unbearable lightness of commitments to diseases of the poor

AstraZeneca, Britain's second largest pharmaceutical company, has closed down its research and development site in India as it has decided to stop research activities into neglected, tropical diseases. This despite the company having pledged (not particularly bindingly) to contribute financially and otherwise to the control of such diseases by 2020, along with government aid agencies, the Bill and Melinda Gates Foundation, and 13 other pharmaceutical companies. The motivation for the decision is overwhelmingly economic: AstraZeneca shares have been losing value over the past while, and neglected tropical diseases are no money makers, to the contrary: those mostly likely to need treatment for such diseases are the least likely to be able to pay for them.

The pullout of AstraZeneca will only reinforce skepticism regarding the commitments of pharmaceutical companies towards neglected diseases. To what extent are these commitments genuine and to be taken seriously? To what extent are they public relations strategies to be abandoned as soon as they cut too far into the bottom line?  

Minimizing exploitation of developing world researchers

When many people think of research ethics, they naturally think of issues surrounding the treatment of research participants by researchers. Are the latter harming the former, deceiving them, exploiting them? Just as it has taken a long time to understand medical ethics as involving something beyond the physician/patient relationship, it has taken some time to conceive research ethics as the study of the ethical issues involved in the whole research enterprise, from the 'micro' level of the consent process to the 'macro' level of research funding priorities or the geopolitics of global health research.

It is refreshing for this reason to see a short piece in Nature Medicine on the issue of the exploitation of health researchers in developing countries. The involvement of local collaborators in research conducted in the developing world is commonly regarded as ethically optional. And there is data to support claims that developing world researchers, when they are involved in research projects (sponsored and commonly driven by external agencies and investigators), often are not named as co-authors of articles publishing the results. To put it brutally, local researchers are typically considered good enough to recruit participants, to collect data, to act as diplomats with local institutions, and to sell the study to local communities. They are implicitly regarded, much of the time, as not good enough to design studies, act as principal investigators or be first authors on research articles. Those privileges go preponderantly to outside researchers from more powerful institutions and nations. So not only research participants in developing countries stand to be exploited in global health research: local researchers may also appear as 'vulnerable populations' in this sense.

Shuchman et. al. offer a number of mechanisms to minimize this form of exploitation. They argue that the WHO should take the lead in urging journals to require local authorship, and for research ethics committees to consider local research collaboration as a component of what constitutes ethical research. More than another code of conduct of scientists is needed. But I think the roots of this problems lie much deeper. Global political, social and economic disparities boil down to weak research and education infrastructures in developing countries. It is fine in practice to say that local researchers should be treated as equals, but if the latter have not had the same resources or opportunities, it is very hard for them to perform as equals. It may also be hard to them to perform as equals when their developed world collaborators are their bosses, or at least those who manage the pursestrings. The situation is made more complex when publication of scientific articles do not have the same weight in all cultural contexts. In countries like the USA, peer-reviewed articles are the coin of the realm, and your promotion and tenure relies heavily on your publication record. But this inordinate stress on publication for career development is not the case everywhere. In short, while the goal is a worthy one, the obstacles to researchers in collaborative global health research being genuine equals can sometimes be quite daunting.