Carl Elliott offers his view on how bioethicists can (and can’t) make a positive difference in the world.
How can bioethicists make a difference in the world? As someone who has tried many different methods and failed miserably at nearly all of them, I have no positive advice. I do, however, have plenty of critical, destructive advice.
Item one on my list: official committees. Never have I encountered a group of academics as enthusiastic as bioethicists about commissions, task forces, study sections, working groups, or any other kind of activity that requires a conference room, bad coffee and a long plane trip. Maybe a few of these committees have accomplished something worthwhile, but, to be honest, I have not seen a lot of evidence for it. At best, most committees are a waste of time. At worst, they socialize their membership into the kind of bureaucratic stupor that we ought to be fighting against. Spend enough time with the suits and soon you’ll be wearing one yourself.
Item two: can we stop talking about bioethics? Let’s face it. Nobody really cares about bioethics other than bioethicists. Only a few hundred sad professors pay attention to articles about the bioethics agenda, or who qualifies as a bioethicist, or the direction the field is headed, or how bioethicists can make an impact. Maybe this is why we all seem so obsessed with what other people think about bioethics. The famous exchange from Casablanca comes to mind. Peter Lorre: “You despise me, don’t you?” Humphrey Bogart: “If I gave you any thought I probably would.”
I am a serial offender, of course, having written far more than my share of articles about what bioethicists ought to be doing. But I have enough self-awareness to realize when a strategy has failed, and this failed strategy deserves to be retired. The first step towards making a difference in the world is to stop thinking of your audience as other bioethicists.
I could go on, but rather than continue in this vein of self-loathing, let me present a case study along with some assessments of what has worked for me and what has not. For the past four years or so, I have spent an extraordinary amount of time on a single case of research misconduct: the suicide of Dan Markingson in an unethical, scientifically dubious, industry-funded antipsychotic study here at the University of Minnesota. Rather than go into the details, which you can read about elsewhere, let me just say that this is the most disturbing case of research misconduct that I have seen up close, and that I am afraid the university may be hiding other cases like it.
When I first learned about the suicide, my first strategy was to make my concerns about the study known in private to university officials. This was a complete failure. All I got was lies, evasions, stonewalling, and patronizing lectures about the respect owed to brave medical researchers who save lives. Grade: F.
My next strategy was to write a muckraking article about the case for Mother Jones magazine. The best-case scenario for an investigative report is that people will read about a scandal, become outraged, and take action to fix it. Obviously, this didn’t happen. However, I will admit that over time it has proven very useful to have a thoroughly fact-checked, lawyered account published in a respectable (if unabashedly left-wing) investigative reporting outlet. So I’ll give my muckraking effort a grade of B.
The next strategy was to gather sympathetic faculty members and write a letter to the Board of Regents, asking for an external investigation. On the plus side, the letter generated some attention from journalists and kept the issue alive. On the minus side, most of the senior bioethicists at the university would not sign the letter. Even worse, when it was eventually sent, the Regents turned it over to Mark Rotenberg, the General Counsel for the university, who not only refused an external investigation but managed to disseminate some misleading information in his reply, which was parroted by the press. Then Rotenberg met with the Academic Freedom and Tenure Committee to discuss the alarming question, “What is the faculty’s collective role in addressing factually incorrect attacks on particular university faculty research activities?” That was not pleasant. I’ll give the letter strategy a C-.
Next up: file complaints to Official Authorities. Actually, by the time I got involved in this case, almost five years after Dan’s death, an extraordinary number of complaints had already been filed by Mary Weiss, Dan’s mother, and her friend Mike Howard, with mixed results. The FDA conducted an incompetent inspection that actually made matters much worse. But the Minnesota Board of Social Work eventually responded (after nearly 4 years) with some harsh findings regarding the study coordinator in the case, Jean Kenney. My own efforts, unfortunately, have been consistent failures. I have tried the Office of Human Research Protection, HHS Civil Rights, NIH Research Integrity, FDA Scientific Investigations and HHS Office of the Inspector General. I also tried a number of internal complaints. Nothing worked. I am reluctantly forced to give my own efforts here an F.
The most surprising results have come from social media. Several years ago I set up a blog called Fear and Loathing in Bioethics for a class in investigative journalism and bioethics that I was co-teaching with Amy Landa. Not long after I added a Twitter account. The class ended, but I have continued using the blog and the Twitter account, and they have been instrumental in keeping the issues in the public eye when the mainstream press stopped paying attention. Last fall I set up a Facebook page called Community Alliance for Ethics in Minnesota Psychiatry, which has become an online home for a number of families who have encountered problems with the Department of Psychiatry at the University of Minnesota. I have also been posting court documents, complaints and other case-related material on Scribd, along with a referenced guide, so that reporters, academics and other interested parties could look deeper into the case and make their own judgments.
Perhaps the most effective of these online efforts was not my idea at all. Mike Howard, a friend of Dan Markingson and Mary Weiss, recently launched a petition on change.org that I have been doing my best to promote. The petition asks the governor of Minnesota, Mark Dayton, to appoint an external panel to investigate the research scandal. The effect has been immediate. In its first few weeks the petition has gotten support not only from activist organizations such as MindFreedom International and Psych Rights but also over 170 academic and professional experts, including three former editors of the New England Journal of Medicine; Richard Horton, the editor of The Lancet; Susan Reversby, the historian who uncovered the Guatemala syphilis studies; Richard Smith, the former editor of BMJ; and Ron Paterson, the former Health and Disability Commissioner for New Zealand. I invite you all to sign the petition at this address and start making an impact.
It is probably too early to give the social media strategy a grade. If it works, it will get an A+. But if I have learned anything from the past few years, it is that I am no good at predicting which strategies will work and which will fail. So I try to remain open-minded (unless it involves committees, in which case my mind is closed). In the meantime, I think it is best to be bold.
The paradox of university life is that we are given the protection to say whatever we want, but we are socialized into saying nothing that will get us into trouble.
Carl Elliott, Professor in the Center for Bioethics, the Department of Pediatrics (University of Minnesota Medical School), and the Department of Philosophy, University of Minnesota.