Fetishes I Don't Get

Thoughts on life, love, and lust.

The Dex Diaries, Part 7: How to Be a Bioethicist

Never name names. Screw ethical principles. And bury the money.

The prenatal dexamethasone ordeal has accidentally taught me the rules of being a successful bioethicist, so—even though I personally suck at this game—I thought I’d share the secrets of winning. Want to be a well-paid bioethicist, with one, two, or even three university appointments? Just get yourself a two-piece navy polyester suit and follow these three simple rules: (1) Never name names. (2) Screw principles; just follow procedures. (3) Bury the money.

Never name names:

Naming real names pisses many bioethicists off. First off, it shows that you’re doing actual research rather than just putting forth entertaining hypotheticals, and they don’t like having to compete with people who do actual research.

If you come across a travesty of justice like prenatal dexamethasone for CAH, and you figure out that one actor—say, one Maria I. New—functioned as the linchpin, just turn it into a fascinating name-free generalized case study about systems failures. Do this, and you might never have to have a bioethicist—say, one Laurence McCullough—come after you for blood.

Find a Therapist

Search for a mental health professional near you.

The funny thing—“funny” as in “ha ha”—is that, if you do dare to name names, your version of McCullough probably won’t actually name your name, nor will he name the names of the 31 academics who co-signed your letters of concern to the government.  Instead, he’ll erroneously refer to you as an “organization”—say, fetaldex.org—because he just can’t fathom individuals openly doing aggressive patient advocacy in their own individual names.

So if you want to succeed like McCullough, be sure never to stoop to naming real people. Sure, naming real names might lead to actual accountability. It might, for example, stop a guy named Dix Poppas from stimulating little girls’ clitorises in the name of medical research. It might result in the FDA actually jumping in to stop a stem cell company from “illegally marketing an unlicensed drug.” Naming names might also help patients and research subjects who were abused figure out what actually happened to them. And naming names might implicitly function as support for the scientists and doctors who actually treat patients and research subjects well.

But it just isn’t done!

I think the profundity of the sin of naming names really sunk in for me when the Hastings Center let me know that they had instituted a specific ban on me with regard to any future writing about prenatal dexamethasone for CAH. By that point, I had written (for free) something like thirty articles for the Hastings Center’s Bioethics Forum, and they’d been happy with them all. But my bad habit of specifying who had done what with regard to prenatal dex—including, increasingly, which bioethicists had done what—led to the editors of Bioethics Forum telling me I was writing “investigative” work which they just didn’t have the resources to support.

When I tried to argue with them, making the point that all essays at Bioethics Forum ought to require and receive the same type of fact-checking, they just wouldn’t budge. They tried to cheer me up by telling me Larry McCullough had been subjected to the same ban. And they tried to cheer me up by assuring me that any other academic could write about prenatal dex at Bioethics Forum, just not me, my collaborator Ellen Feder, and Larry. Presumably they meant people who wouldn’t name bioethicists’ names were allowed to write about dex.

I guess that an institution “dedicated to the public interest”  would rather not spend its resources on hard-core patient advocacy, because the money is really better spent on—I don’t know, sandwiches and tea or something. Or getting more funding.

I did once try not naming names. Shortly after receiving the gag order, I wrote a piece for Bioethics Forum called “On Naming Names,” and in it, I named no names. One essay later, I quit. I just didn’t feel like giving them my name anymore.

I know I’m going to be considered terribly rude for calling out the Hastings Center for the person-specific-topic-specific gag, because they generally have a good name, which they try hard to maintain—along with their donors—by not pissing anybody off. Like I said, I suck at this.

Follow procedures, not principles:

Don’t worry your pretty little head about actual ethical principles. Just go ahead and follow the procedures the guy before you put in place. This way you never have to think, and most importantly—because this is the real goal of bioethics—you can’t get sued.

Is your university medical school recruiting patients to psychiatric drug studies by threatening them with involuntary committal if they won’t enroll? Just assure the press that there’s no law against that!  (Well, there wasn’t at the time.) Want to justify pregnant women being misled about the experimental status of a fetal-altering drug? Just tell everybody the research ethics rules didn’t really require anybody to make sure these women knew the truth!

At this point, there are so many rules and regulations about these things, you can almost always find one that will cover your ass, at least long enough for a journalist to turn her attention to someone else’s ass. If you become especially adept at this, your university will reward you handsomely. (The private sector will pay even better, right, Glenn?  Especially if you can obtain “hospital exemptions” thingees?)

Robert “Skip” Nelson, the guy who ran the FDA investigation on prenatal dex, is a truly great bioethicist. How do I know? Well, his whole response to our complaint was nothing but a big list of appeals to procedures, totally free of meaningful principles. Who else but a bioethicist could make the FDA’s Office of Pediatric Therapeutics conclude that an off-label intervention designed to alter fetal development and used in the U.S. entirely outside of controlled, long-term, prospective, IRB-approved trials was nothing of serious concern? Behold the sheer awesomeness of when bioethics meets a regulatory agency!

Moreover, when I found out that Nelson had been accepting a (paid?) leadership position with the American Journal of Bioethics (AJOB) while AJOB was simultaneously being used to undermine the call for the FDA investigation he was running, Nelson rushed to insist that he had run the editorship position by the ethics guys at the FDA, so it was all okay. Because, you know, they followed the procedure.

When we made complaints to AJOB about their failure to disclose in New’s AJOB “Vindication” article that the FDA official whose memo she used as the basis of her “vindication” had taken a (paying?) job in the leadership of AJOB—and about their failure to disclose that McCullough worked for Mount Sinai and Cornell, the two institutions at the center of the investigation he wanted us to shut up about—and about their failure to disclose that McCullough’s co-author Frank Chervenak had been on New’s grant—do you think AJOB worried about ethical principles?

No way! Because they’re too good at being bioethical! They just hinted to us that some sort of procedure had been followed and declared the matter closed.

Bury the money:

You don’t ever want to find yourself in the awkward position of having someone find out that you’re paid by the people you’re promoting and/or defending. So it is very important to always set up the payment systems so that, by the time the check arrives in your pocket, it is printed on paper watermarked "plausible deniability."

Back in February, I asked Art Caplan—whom I generally like and respect, especially given that he names names—this question: “Would you please tell me, for the record, why you believe your publications on vaccines, in both the medical literature and the popular press, have not needed a disclosure indicating that aspects of your work on vaccines (including the vaccine ethics conference and the CVEP [Center for Vaccine Ethics and Policy], for example) have been financially supported by vaccine makers?”

Caplan answered, within five minutes:  “I don’t take money from vaccine makers. all support for vaccine work at Penn goes to the CVEP which is a collaboration of wistar, chop and penn bioethics. wistar administers the project, handles money etc. there are no salaries or any money paid to me.” (All typos original.)

A few minutes later, he added, with no typos, “So although I am staunchly pro-vaccine, I long ago made sure not to take any money or personal compensation for vaccine related issues.”

Sure, far away from his articles and his bold challenges meant for public consumption, Caplan thanks the makers of the vaccines he promotes for funding his conferences and his center, a center that even offers writing services to vaccine makers. (They helpfully offer these drug companies “development of articles for peer-reviewed journals positioning the underlying issues involved to contribute to the field overall.") But the checks aren’t written to him.

In case you’re wondering, yes, Caplan is on the board of AJOB.

Myra Christopher of the Center for Practical Bioethics tried to use the same logic when caught promoting painkillers while benefitting from substantial funding from the painkillers’ makers. Sure, the endowed chair in which she comfortably sits is made possible by a $1.5 million dollars in donations from Purdue Pharma, maker of OxyContin. But Purdue didn’t write the check to her. They wrote it to the Center, who then wrote a check to her.

And yes, Christopher is on the board of AJOB.

When I found out that Larry McCullough works for a program of Mount Sinai, he also tried to make his little problem go away by insisting the checks come from an account of Mount Sinai’s collaborating institution.

And yes, not only is McCullough on the board of AJOB, and on the board of Nelson’s subsidiary AJOB journal, he’s also on the AJOB conflict of interest committee.That’s how you know AJOB is a real leader in bioethics.

Don’t call me a bioethicist, and don’t call the bioethicists at all:

So now you see why I get a little prickly when people refer to me as a bioethicist. I make way too little money to have earned that title, and spend way too much time naming names and worrying about principles instead of procedures. I actually completely suck at being a bioethicist.

What I do is history of medicine and patient advocacy. Patient advocacy is actually the opposite of bioethics, because bioethicists are the people who increasingly set up and justify the systems we patient advocates have to fight.

This became especially clear to me in reading Laura Stark’s book on the history of Institutional Review Boards. I used to adhere to this crazy origin myth, that bioethics grew out of the desire to make sure yet more ethical travesties were not visited upon unsuspecting patients and research subjects. Boy, was I naïve. Stark’s book makes it clear that bioethics actually grew out of the desire to make sure that, in future ethical travesties, liability would be sharply limited. When you look at the history of bioethics, it’s lawyers all the way down.

Stark writes, about the founding of the IRB system by the NIH, “For centuries, professional organizations had created codes of ethics that attached to practitioners, that is, to individual people. The group-consideration policy [the forerunner of the IRB], by contrast, was stamped on a building”—a building that would eventually become populated with overpaid people in blue polyester suits who would watch out for the man—right after they watched out for themselves.

Two weeks ago, I was at the University of Utah’s Primary Children’s Medical Center, talking to the nice folks there about the new standard of care for children born with disorders of sex development (DSD). I reviewed for them the 2006 “Chicago Consensus” of the pediatric endocrinology groups, and reminded them that the consensus says that DSD care teams should include specific specialties, including pediatric psychology or psychiatry, genetics, endocrinology, and so on.

I told the assembled Utah doctors and nurses that the consensus also says that the team should have an ethicist “if available.” But I strongly recommended against it. I encouraged them instead to engage, every day, in ethical reflection, to struggle themselves—in dialogue with each other and with their patients—with ethical problems. The practice of ethics is much too important, I told the group, to leave to people who call themselves "ethicists."

But every day I wonder something: The American people might reasonably assume that all these people out there called “bioethicists” are actually looking out for the best interests of patients and medical research subjects—and doing so without massive undisclosed conflicts of interest. They assume places like the Office of Human Research Protections, the FDA’s ethics arms, the Center for Practical Bioethics, and the various ethics programs at hospitals and medical schools are where money is being spent, ethically, to ensure strong patient advocacy.

What if they knew those “ethicists” are the very people we actual patient advocates are being forced to fight?

Alice Dreger, Ph.D., is a Professor of Clinical Medical Humanities and Bioethics at Northwestern University's Feinberg School of Medicine in Chicago.

more...

Subscribe to Fetishes I Don't Get

Current Issue

Just Say It

When and how should we open up to loved ones?