The Dex Diaries, Part 10:

Taking It Personally

by Alice Dreger, PhD

 

Kiira Triea wrote the first Dex Diary for us, sharing what it was like for her to be changed in the womb by a fetal drug intervention that ended up radically altering the course of her life. At the time Kiira wrote her essay, she had been feeling sick and weak for many months. Just a few weeks after I posted her article, the source of her misery was finally diagnosed: terminal cancer. She died two weeks ago.

There’s no way to know whether the cancer that killed Kiira was related to her prenatal exposure to progestin—related either directly, by seeding the cancer in utero, as we now know DES exposure can do, or indirectly, by leading to a cascade of suffering that included heroin use, something that can result in liver cancer. What kind of cancer Kiira had isn’t very clear to me—Kiira said they thought it was one kind and then another. I have the sense the doctors didn’t bother to do a careful pathological analysis since, by the time they realized what was going on, her body was shot through and there was no hope. What a loss.

When I shared my remembrance of Kiira with Fran Howell, the executive director of DES Action and the author of our eighth Dex Diary, Fran responded with her usual compassion. She added that it was no wonder I took dex personally. But the truth is that when I started out on the dex work, I wasn’t specifically thinking of Kiira’s prenatal intervention, or anyone else’s. Yes, I had the history of DES in my mind, but I wasn’t at that point thinking specifically of the women I personally knew who had been assaulted by DES. If I was “taking it personally” in any fashion, I was sympathizing most consciously with the pregnant women whom I believed were being misled and used.

But Fran’s comment got me thinking about the issue of “taking it personally,” and thinking especially about the question that so often burns in my mind lately: Why do some people stand up when they see a wrong, and others sit it out? Why was Ellen Feder willing to be the corresponding author on our letters of concern? Why was Eric Vilain willing to confront Maria New in public about the absence of informed consent? Why did Walter Miller push, again and again, to shut the intervention down?

And why were others willing to become part of the problem, even when they must have understood what was going on?

Of course, none of us can stand up for every wrong we see in our own fields, every wrong we read about in the newspaper, every wrong we witness while walking down the street. I am writing this on my way home from San Diego, where, on my morning walk from my hotel to the History of Science Society conference I was there to attend, there seemed to be a homeless person every fifty feet. I “had” to overlook all of those people because I didn’t see how I could hand out enough money to make any real dent, at least not without costing myself all of my traveling money and my sense of safety.

So why do some people stand up sometimes, and risk something personal, even when the issue is not obviously personal?

At the conference, I gave a talk in a session on humor, and in the talk, I suggested that you can’t do this kind of work unless you’re willing to laugh about the insanity of it sometimes—to satirize your situation, to mock the inevitable cycles of the human condition. One of the people in the audience wondered aloud during the Q&A whether the use of humor might draw more people into this kind of active investigatory history work—seduce them, I guess, into thinking it’s fun?

I let someone else on the panel take the question. I was feeling stupid. The truth is, even after almost two decades of overt activism on my part, I’m just not sure what moves people to act or not to act. Is it that those of us who act have taken something personally? Are the people who act natural lumpers who say to themselves, “That could be me, or my child, or my friend”, whereas the splitters say, “That’s not my issue”?

I wish I knew. All I really know is that sometimes I take it personally when people called to do so will not act. But I’m not even sure why I take it personally.

The split within the field of bioethics has been made so very vivid with dex—the split between those who use bioethics to do patient advocacy and the people who want to keep everything impersonal. As if they knew I was writing that snarky Dex Diary called “How to Be a Bioethicist,” the Hastings Center has just published an essay by one of their own staff members basically telling us we made dex and Dix Poppas’s clitoral stimulation studies too personal, what with all the naming and outrage and—well, our tone. The author seems to think we should have stuck to dry and esoteric discussions of normalization rather than “distracting” people with discussions of violations of research ethics.

Insert a four-second sigh here.

Maybe it’s because I’m an historian and I teach the Tuskegee Syphilis Study, but that Hastings Center article reminded me immediately of a 1972 editorial in the Southern Medical Journal by one of the doctors involved in the Tuskegee study—basically a weak apology for those who went along. The positioning of the authors feels parallel, as do the complaints about how using blunt language in the media stirs up people’s passions and cause them to feel simply outraged about things that are supposedly terribly complex. Does the Hastings Center Report mean to be playing the Southern Medical Journal in the history of dex, really?

The San Diego meeting was a joint meeting of the History of Science Society and the Philosophy of Science Association. I went not really to give that paper—the paper was an excuse to go—but to go back to my roots, to be among my own. On Friday morning, I sat in the circle of the women’s caucus of the History of Science Society, and listened to eighty or more women say their names, their affiliations, and what they’re working on. I felt this huge feminist surge of happiness. As I said to a feminist philosopher I met later at the meeting, a woman who said she knew my work, “It feels like a big relief to be at a conference where no clitorises are at stake.”

She laughed and said that while that was true in a good way, it was perhaps also true in a bad way. She meant this: While it is true that no one here is going to give anyone a hard time about trying to defend clitorises, it’s also true that these two societies are so conservative that no one is here defending clitorises.

And yet, we were having this conversation just outside a room where there was soon going to be the first-ever meeting of a new joint caucus of historians and philosophers of science interested in social engagement. And you know what? By the time that first-ever meeting of the socially-engaged HPSers started, the room was so packed it was SRO. There were nearly fifty people jammed in, all energized and already converted to the mission of doing what we can do to help others. There were people from every generation, and people sharing stories of working with Congress, of engaging marginalized populations in deliberative democratic discussions, of using the media to educate the public about RU-486 and climate change.

The organizers had even come with a written “manifesto.” And a real sense of urgency.

I’m seeing signs of this all over academia—of a reawakening of the pre-Reagan social orientation of academics—signs that many of us professors now believe we cannot simply do our own obscure projects and hope the world outside is going to turn out okay. It took me back to the collection of signatures for the dex letters of concern, and how many people I didn’t know signed on, to try to get the government to act to protect the CAH-affected families.

I don’t know what has caused this reawakening in academia. Obama? The GOP’s assaults on science and on patients? Jon Stewart?

I’m not at all sure. I just know I don’t feel nearly as alone in academia as I used to. I’m feeling increasingly surrounded by fellow PhD’s and by MDs who seem to be taking a lot of things personally.

And on dex specifically, we are really getting somewhere. In the leading journal in obstetrics, the American Journal of Obstetrics & Gynecology, Walter Miller and Selma Witchel have just published a paper advising ob’s that prenatal dexamethasone for CAH should not be used. They review the evidence we now have, and make the case that the risks are far too high for the purported benefits.

I only wish the paper had come out in time for me to show it to Kiira. We could have together rejoiced over this message going straight to the OBs—and also together groaned over Miller and Witchel representing genital surgery as if that’s the solution and talking about prevention of “behavioral masculinization” as if it requires no specific criticism. I’m sure we would have talked about how those aspects of the paper suggested we had real work left to do.

This will be, I think, the last entry in the Dex Diaries series. That's not to say it will be the last of our paying attention to dex, but for now, my collaborators and I feel we've done about the right amount of debriefing in this venue. For those of you who want to keep following the story, I suggest you occasionally check out the updates page of fetaldex.org. The book I have coming out next also includes three chapters on the dex story. When it's out, I'll let folks know.

In the meantime, my thanks to those who contributed, and to those who have read our thoughts. We really appreciate how many people are now teaching the history of dex using our JBI paper (which you can download for free here). We hope that, together, we can prevent another round of deeply unscientific and unethical fetal drug experimentation. I feel we all owe it to Kiira.


The Dex Diaries constitutes a series of short essays unpacking the story of prenatal dexamethasone for congenital adrenal hyperplasia. The series is edited by Alice Dreger, PhD. Copyright Alice Dreger, 2012, all rights reserved.