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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