Sunday, August 02, 2015

Pinker tells bioethics what its new moral imperative is, or not

Steven Pinker has written a provocative opinion piece today in the Boston Globe about bioethics. It was apparently sparked by a new technique for editing genomes, namely CRISPR-Cas9, 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.

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?

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:

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. 

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:

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. 

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 was made by the scientist that invented CRISPR-Cas9 in the first place.

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.

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Saturday, August 01, 2015

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. 

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