Final day, ASBH conference

A thick mist hangs over the buildings and it is lightly drizzling. San Diego, since the beginning of the conference on Friday, has been doing a pretty good imitation of Belgium. Today is only a half-day, and a good number of conference attendees come with their carry-on bags, enabling them to bolt towards the taxi stand at a moment's notice. They have already entered into liminal space, neither here nor there.

One of the early morning sessions is rather bruising, though the topic lent itself to this: whistleblowing in bioethics, what to do when we discover unethical practices. Carl Elliott spoke about the suicide in 2004 of 26-year old Dan Markingson, who was enrolled in a University of Minnesota led, industry-funded, clinical trial of the antipsychotic drug Seroquel. The tale he told appears in the September issue of Mother Jones, and the case reveals not just faulty informed consent but a broader, systematic rot: clinical trials are increasingly becoming a plaything for pharmaceutical companies, which function not so much science as marketing tools, where the data gets massaged and researchers are lining their pockets. The participants get the short end of the stick, and when things go south, the pharmaceutical companies call their legal department and limit whatever recourse wronged participants or their family members may have. The IRBs stand idly by, either unwilling or powerless to intervene, despite their central mission. A compelling tale, but I almost needed anti-depressants myself afterwards. Alice Dreger and Ellen Feder discussed two controversial research studies they have brought to public attention lately: clitoroplasty studies and the experimental (but not IRB approved) use of dexamethasone, a risky Class C steroid aimed at female fetuses that may have a form of congenital adrenal hyperplasia (CAH). It got heated: an audience member accused Dreger of presenting falsehoods, which she denied, and Dreger accused the audience member of bullying those who criticized the dexamethasone studies, which he denied. Those (like me) who had no independent information may have felt that they were witnessing an obscure family dispute. The whole session reminded me: despite appearances sometimes, bioethics questions are not merely 'academic'. When there is a real conflict, it is a political conflict, with money and reputations and well-being at stake.

Ethics consultation services. If there is one area in bioethics that stands a chance of being professionalized, this is it. At this conference, I got the impression that no one wanted to enter into the old fashioned (philosophical) discussions about the possibility and meaning of 'ethical expertise'. We have moved on, apparently, and now the question is how to best operationalize the expertise we possess. In an affinity meeting on Saturday, there was much talk (but little discussion) about a proposal to develop certification procedures for clinical ethics consultants. What is needed, it was said, was non-negotiable standards for clinical ethics consultation, have current practitioners take some sort of examination, and get officially certified in a way that will (it is hoped) enhance their professional status and authority. How this is to be funded, and how to make medical institutions care about this, was unclear. The value of research ethics consultation, independent of sticky certification questions, was made clear in the last session on Sunday. Members of the NIH's research ethics consultation service provided a peek at their internal activities, challenges and lessons learned. From the looks of it, the decisions made were very likely more sensitive and better informed than they would have been otherwise, and that is probably all you can really ask for.

A four-beer lunch with the delightful Marin Gillis (fellow graduate from the University of Leuven, and currently at the University of Nevada), and I headed towards the hotel, towards the laptop, and home.

ASBH, Day One

One thing about the American Society for Bioethics and the Humanities conference was clear after just one session: don't expect a very deep discussion about anything. Not that there is a lack of quality speakers. To the contrary. It is just that within a 15-20 minute time-frame, there is only so much room for maneuver, and in fact the abbreviated time slots inspire speakers to race through their talks at a manic pace -- this conference comes but once a year, and they are going to get all the information out, come hell or high water. Ideas can get blurred or hollowed out this way. So it is best to let intellectual expectations drop somewhat and regard the sessions as 'samplers', where you are offered tastes of a diversity of themes and directions in bioethics.

Choosing what to taste is always difficult. Do you go to sessions on topics you already know something about? Or on something that you are clueless about? Both have potential pitfalls and benefits. A session on vaccines offered little information beyond the usual puzzlement (on the part of scientists) about why there are people who refuse to have their children vaccinated; I quickly took off to a large, thinly populated and appropriately spooky hall where the discussion focused on the ethics of using human remains. The idea was floated of a market in cadavers, and I involuntarily recalled what is said to happen in South Africa, the stealing of body parts from cadavers to be sold and used for muti, a sort of witchcraft. The session was rounded off by an interesting talk on the images of (and fascination with) the vampire in popular culture, and what vampire fiction could mean for bioethics. I thought of the persistent image, in Africa, of foreign researchers as vampires, coming to literally suck blood of locals.

The exhibit hall had an impressive display of well-stocked book stalls, conveniently located at a short distance from the coffee. My browsing experience, however, was somewhat disrupted by a couple of booksellers who were both selling what you might call 'other-help' books (as opposed to 'self-help') about clinical ethics decision-making. They both were aggressive, in their own ways: one was quite literally in my face, smiling and waving brochures, while the other was greasing the wheels of trade by offering free sunglasses and hand sanitizers. And both merchants featured books with algorithms and flow-charts, their own preferred paths to successful ethics conflict resolution. All very cheerily practical, like those who sell vegetable cutters in supermarkets. There really is a market for everything.

Low point of the day: a talk on international health research that was all over the map, conceptually muddy and in places, factually wrong. The cringe factor was high, and it was a pity, given that there is no little international bioethics on offer here. Fortunately, the session had two redeeming and stimulating talks after that, on the challenges faced by those wishing to provide compensation for research-related injuries (Jonathan Jay) and another on the parallels between moral responsibilities of photojournalists and international health researchers towards their respective 'subjects' (Valarie Blake). I was thus cheered up by presentations which were, on the face of them, pretty depressing.

Highlight of the day: the session on ethics and pain treatment. The general consensus among the speakers was that pain is undertreated in the US, at least partly due to the inability to visualize any physical source of pain by medical devices. A question of out of sight, out of practice and policy. The affable Daniel Goldberg (who writes his own excellent Medical Humanities blog) stormed merrily through his talk, making a strong case for a need to cultivate (political, socially and policy-wise) a greater receptivity to the subjectivity of pain, rather than merely tweaking current opiate policy. I couldn't help but think if pain is undervalued and undertreated in the US, what must the situation be in the developing world, where there are less diagnostics and less availability of opiates. A new twist on the phrase: a world of pain.

Field trip: the ASBH Annual Meeting in San Diego

Normally I don't do this sort of thing. When I am not off to the DR Congo, Malawi, South Africa, Burundi, Madagascar or some other far-flung place, I am pretty much parked on my perch in North Carolina. Travel within the United States over the last decade has been very limited, and travel to domestic bioethics conferences pretty much absent. When you are already jetlagged, and poisoned by (increasingly) small bags of salted peanuts, why drag your sorry self to Cleveland or Nashville?

This week marks an exception. The annual meeting of the American Society for Bioethics and Humanities is being held in San Diego from October 21st-24th. My decision to go was not due to Glenn McGee's vigorous but somewhat unbalanced call last week for bioethicists to attend the event on the American Journal of Bioethics Blog. I had already signed on. And it is not due to the location, though I heard that it is sweet. For me, it is more about learning what practitioners of this odd activity in the United States are up to, think and care about, and believe others should think and care about. Connecting names and reputations with faces and fashion choices.

So, in the next few days, this outsider and first-timer will be posting reflections on the ASBH conference. How objective it will get depends on who mixes the cocktails.