Ordinarily I clean my bedroom closet in the fall and the spring, when the weather is mild, but I just cleaned it on what felt like the hottest day of the year. Our pet rat Truffle has developed a thing for me (even scattering flower petals at my pillow), and lately he has taken to sleeping in my closet. Problem is, he has an expensive taste for my shoes, so I realized I needed to tidy up my closet promptly to get the shoes up out of Truffle's reach.
Flower petals left at my pillow by my rat, Truffle.
As is inevitable, as I worked on the closet, I thought about work. Specifically I was thinking about the work I'm doing with a student to try to clean up one corner of the medical literature. We're working on making sure that the medical literature reflects major medical consensuses about the off-label use of a drug, dexamethasone
, on pregnant women, to try to avoid development of ambiguous genitalia in certain female fetuses.
One heavy-weight in the field, pediatric endocrinologist Maria New, has long been speaking of this drug use as if it has been proven "safe for mother and child," when in fact, over and over again, various medical societies have said "Nuh uh!" In August, yet another consensus is coming out saying this off-label use should continue to be understood as experimental and should only be done in controlled clinical trials with human research protections in place. This position is endorsed by five key medical societies (including the American Academy of Pediatrics) and two patient advocacy groups.
Yet if an ob/gyn or a pregnant woman looking for information on prenatal dex for CAH doesn't do an exhaustive medical literature search, she's likely to come upon New's work, and think prenatal dex is a no-brainer. So this Northwestern University student of mine (earning two masters, one in Genetic Counseling and one in Medical Humanities and Bioethics) is doing a practicum this summer with me, attempting to do what is, to my knowledge, rarely if ever done: cleaning the medical literature to make sure people know what the medical expert consensus states about a drug or procedure.
When I mentioned this work to a couple of colleagues who asked me what's new on the dex project, they looked confused. "Do bioethicists normally do this? Make sure the literature is safe for ordinary practitioners and patients?" No, I answered, and felt like answering that this is yet another reason I don't really think of myself as a bioethicist. Bioethicists are like academic doctors: rewarded for papers, not for better patient outcomes. I myself might not even be doing this if the student had not come to me asking for the work, because she was horrified to discover that prenatal dex for CAH is being taught as standard of care to students like her. (And to the M.D. students at my own school, so I hear.)
This isn't the first time I've thought about the problem of the messy closets of the medical literature, full of papers that might well harm patients and practitioners who don't know that the papers are based on problematic studies, are seriously biased, or are just plain wrong according to virtually everyone else in the field. For example, at the international sexual orientation research conference I attended in Canada in early June, inevitably, the matter of George Rekers came up, and I found myself thinking about Rekers' messy closet.
You may remember Rekers as the anti-gay-rights psychologist who hired a pretty young fellow via rentboy.com (a gay escort site) to lift his luggage and provide him massages during a ten-day vacation in Europe. Presumably the rub-downs did not coincide with the tender counsel Rekers claims he provided to the comely young gay "sinner."
I've been familiar with Rekers for years because of his long-running homophobic attempts to shape the medical and social treatment of gay and lesbian people. As a clinician-researcher, Rekers worked to show that absent fathers and mentally ill mothers, and not genetics, are to blame for "gender disturbed" sons. He published case studies alleging to show how "sexual identity disturbed" girls and boys could be successfully subjected to "reparative" psychological therapies that would leave them straight. More recently, he testified against the rights of gay and lesbian adults to be foster parents, claiming-among other falsehoods-that they're more likely to molest children (leading me to nickname him "George the Home-Rekers").
And Rekers enjoyed life as a darling of NARTH, the officious-sounding but evidence-challenged National Association for Research & Therapy of Homosexuality-that is, until it became clear that George himself could not be repaired. At that point NARTH threw him overboard. (So much for "love the sinner.")
The folks at the sexual orientation conference, at least half of whom are members of sexual minorities, were as delighted as any good progressive with Rekers' downfall. But I had a serious question for them: Knowing what we now know, should we move to undertake some kind of reparative therapy on Rekers' "scientific" record?
Because here's the thing: if you do a pubmed search on Rekers' oeuvre, or on "therapy" for homosexuality, you'll find a substantial publication record by the man, including many articles in reputable journals. This made me wonder about what it means for us to leave that work up there, in the medical literature, as if it were just as reliable as any piece of scientific literature.
It's not as if Rekers got caught stealing from the collection plate or not paying his taxes. This guy dedicated his entire career to showing that homosexuality is a treatable pathology, and now it turns out he's gay, and apparently an unrepentant liar about it at that. Doesn't this make, in retrospect, a fatal conflict of interest for his articles?
I put that to several of the clinician-scientists at the Canadian meeting. They had a few reasonable concerns: Practically speaking, how do you go back and mark that literature in a way that indicates the skepticism we have? And would that be censorship, given that we suspect but cannot prove that the work was tainted? They also asked me whether anyone sensible pays attention to Rekers anyway. To that, I pointed out that Florida and Arkansas had, in their deliberations over the rights of gay people to be foster parents.
The larger question that came up was a really interesting one: Doesn't everyone have some kind of conflict of interest in their work, given that we all make our names and livelihoods and identities off of our work? In other words, what makes Rekers' conflict worse than ours? One colleague gestured with his arm, sweeping the room, and said to me, "Alice, look at how many of us in this field are gay and out. Do you think we have no horse in this race?"
This, then, set me on a long meditation on what ought to count as a fatal conflict of interest (CoI). We tend to think of CoI's in terms of money, and there's every reason to believe money matters to how people make decisions; studies suggest it may be remarkably easy to buy a doctor, especially if she believes she can't be bought. No doubt the substantial sums Rekers was paid as an "expert" influenced his professional work.
The maddening tendency on the part of many medical institutions has been to ask for disclosure of financial CoI's, as if disclosure resolves the conflict. But disclosure is obviously not enough. So when ought a medical journal, medical school, or regulatory agency decide that a financial CoI is great enough to be fatal?
And what about those other CoI's that are harder to articulate? I'm talking here about the ways in which our identities and sometimes our souls (for lack of a better word) are tied up with our work. I have often been asked to review papers on atypical sex, and when I'm asked to report my CoI's as a reviewer, I'm stumped. My fifteen or so years of intersex advocacy has cost me more money than I have earned as an advocate, but isn't it relevant that I've chosen to be thousands of dollars in the hole when it comes to intersex politics? That "lost" money ought to be as much a sign of my brain's non-objective structure around intersex as the doctor (like Dix Poppas) who is sometimes paid cash to do clitoral reduction surgeries or the doctor (like New) who sets up an eponymous foundation to attract patients and research subjects to a treatment on which she's staked her reputation.
My tendency has been to follow my internist-mate's rule about injuries: "If you have to ask if you should go to the ER, you have to go to the ER." So my version is this: "If you wonder if you have a CoI, you have to report a possible CoI." Thus, as a reviewer, I have probably sent in some of the strangest CoI disclosures in the history of medicine-statements like "I have reviewed this paper with an eye towards accuracy in terms of the medicine, science, history, and ethical theory. I disagree with the political slant of the authors and thus I am not qualified to judge whether the paper should be published, but instead have chosen merely to advise the editors on what is novel and what is accurate." Call it a disclosure of a chronic CoI, if not quite a fatal one.
Truffle (top) and his buddy Treacle (bottom).
Feminist philosophers (like Sandra Harding) have long pointed out that it is impossible to operate free of interests, and have suggested instead we all be honest about where we are standing when we look and think and speak. It makes sense; it would have been good if Rekers had told us he is a self-hating gay man. For science, and for those whose lives are impacted by science, Rekers' kind of silence is deadly. But when, I wonder, do we decide that, even if the researcher is shouting, "I'm not dead yet!", it's time to bury their work? I don't have any personal experience here yet, but I'm just guessing that dead rats make for closets that stink.