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.
Labels: ASBH, bioethics