Intersex Treatment as Standard Medical Practice, or, How Wrong I Was
In 1998 I published an article in the Hastings Center Report criticizing the standard of care for the treatment of intersex1. (Intersex is the general term used for a variety of conditions under which a person is born with something other than standard male or standard female anatomy.) I ended that article by arguing that the treatment of intersex was unlike anything else in modern-day medicine, that it looked like what George Annas had termed “monster ethics”—the treatment of supposedly “deformed” children by means that would otherwise be considered unethical2. Back in 1998, I thought the standard treatment of intersex was so morally outrageous that, once exposed, it would quickly change. I was struck in particular by three components of intersex treatment that seemed to me extraordinary and morally specious. First, textbooks and journal articles instructed practitioners to lie to their intersex patients and to withhold information from them about their conditions. Second, otherwise healthy children were being subjected to procedures that risked sexual sensation, fertility, continence, health, and life simply because those children didn’t fit social norms The third problem was the total lack of evidence—indeed, the total lack of interest in evidence—that the system of treatment was producing the good results intended.
After I published this article and the related book3, many academic ethicists, journalists, and activists quickly agreed that the “concealment-centered” model of care for intersex was fundamentally flawed and needed changing. But the reaction among the medical establishment has been notably slower. Only now are some major medical centers starting openly to employ the reform model of treatment advocated by the Intersex Society of North America, an advocacy and policy organization devoted to improving the social and medical treatment of people born with atypical sex anatomies (an organization on whose board I have served since 1998). Only now are some medical students starting to learn something very different from what they learned in 1998 about how to understand and intersex. Indeed, it appears that in most medical centers and schools intersex is still treated according to a concealment-centered model that recommends clinicians withhold or misrepresent critical information and surgically alter children’s healthy genitals to calm their parents.
I’m often asked why intersex medicine hasn’t changed, and nowadays I think that the reason must be because, in spite of what I thought in 1998, the treatment of intersex actually looks a lot like other realms of modern medicine. The core components of the treatment of intersex didn’t—and don’t—shock most of the folks treating intersex because they are in fact pretty familiar. I have come to realize that when I started work to change the medical treatment of intersex I was really naive about medicine. As a consequence, nowadays as I pursue intersex scholarship and activism, I no longer feel (as I did in 1998) like I am exposing a dark and tiny corner of medicine. Today I feel like I’m trying to shove the world’s biggest elephant when my feet are covered in soap.
How is the “standard of care” of intersex treatment like the rest of medicine? Consider first the issue of lying to patients and withholding information. In 1995 the Canadian Medical Association awarded a medical student a prize for an article arguing that practitioners had an ethical duty to deceive patients with Androgen Insensitivity Syndrome (AIS—an intersex condition) about the nature of their conditions8. The logic was that the patients would needlessly suffer from knowing the truth about their intersex condition. In most of medicine today practitioners would never think it their ethical duty to lie and withhold critical medical information; indeed most would see their duty as the opposite. But I’ve come to realize that, at least in pediatric care of serious medical conditions, it is still often the case that practitioners withhold critical information from patients and parents under the guise of bearing the burden of knowledge for them. Sometimes the information withheld is about well-established and well-respected patient advocacy groups who would provide an alternative perspective on treatment options (often available at rival institutions), sometimes the information is about how little is known about outcomes for recommended options, and sometimes it is about how much difference it makes which surgeon you engage for a particular procedure.
A lot of the choice of what to reveal falls under the guise of “clinical judgment,” and I think in 1998 I had a simplistic idea of what might constitute “informing” in advance of obtaining consent. I’ve come to realize how often the ways lines are drawn by clinicians—lines cutting off patients and families from information that some might consider critical—shades well into paternalism4. And all over medicine there is great and problematic variation in how much doctors are willing to reveal about their own uncertainties. Often, uncertainty seems to serve as an excuse for paternalism rather than the critique of it that it could be.
What, then, about this issue of changing otherwise-healthy patients to fix social norms? Isn’t that unusual in medicine? Hardly. It happens to the great majority of boys born in this country when they get circumcised, when children with questionable diagnoses of ADD or ADHD are put on powerful stimulants, and when children who are just short are put on growth hormones. This isn’t a simple case of parents acting as tyrants to their children. Since becoming a parent in 2000, I’ve realized how much I underestimated the parental (and sometimes pediatric-paternalist) desire to “normalize” children, a desire that is clearly a manifestation of the visceral—almost savage—desire to protect. Whereas I used to think that this push to “normalization” signaled a rejection of the “abnormal” child, I am now more inclined to think that the push is better seen as a paradoxical loving acceptance of the child. The parent (and pediatric surgeon) sees the child as essentially perfect, and wants the often-cloddish and boorish world to see the same, so she “reconstructs” the child to normality or perfection. In 1998, when, thanks to Art Frank’s work5, I recognized the mythology of calling intersex surgeries “reconstructive,” I think I failed to understand how much parents and surgeons believed in the restitution narrative they spoke. They really think they are restoring the child to the perfection they’ve come to see within that child.
In that sense, I think I failed also to see what Adrienne Asch does in “Distracted by Disability,”6 namely the conflicted position of the physician approaching the congenitally or chronically “disabled” patient. How is it the surgeon can truly accept the whole child born with an unusual anatomy—including the “deformed” anatomy which will very likely persist and form a critical aspect of that person’s identity—and also seek to “rescue” her from it? In 1998 I thought doctors treating intersex had put themselves in a contradictory position—wanting to help patients while unintentionally hurting them. Now I realize what I am calling them to is a much more contradictory position. How could they put down their tools of “correction” when in their minds that would signal abandoning the child, rather than accepting her? More generally put, I think I misunderstood to what extent intervention is the primary means of demonstrating caring for many clinicians, patients, and family members. This is especially true as non-intervention gets represented almost always as cheapskate HMO-type behavior, or as racist, sexist, or classist (which it sometimes is).
So here’s where I used to wish the evidence would save us. Here’s where I thought, in 1998, that we could all look at the treatment of intersex and say, “My word, they’re cutting down phalluses and withholding information and building vaginas out of colons in infants with no evidence that it produces the desired results of a healthy patient!” But then slowly I realized what Howard Brody and Aron Sousa (my partner, a philosophical internist), and Libby Bogdan-Lovis were saying to me: we don’t have evidence for most of what happens in medicine. The treatment of intersex isn’t the exception; it’s the rule. Tradition and storytelling trump evidence—they trump even the desire for evidence much of the time in medical practice.
The question of evidence, though, is one place where there’s been progress in the treatment of intersex. Some clinicians are finally trying to get good data on what’s happened to people who were treated with the “concealment” model. In the U.K, there’s been model leadership in this field by the gynecologists Sarah Creighton and Catherine Minto. But most clinicians treating intersex continue to believe whatever evidence we have doesn’t apply to them, because their surgeries are better, their gender assignments more sensible, their patients obviously happy. They don’t think the evidence will matter that much.
And part of me thinks they’re right, but for the wrong reason. They think their surgeries are better than the ones now being evidenced to have resulted in poor outcomes, so the evidence doesn’t matter. I think the evidence about which kind of clitoroplasty leaves more sensation won’t matter much because, in the end, it’s just wrong to cut healthy tissue off a girl’s clitoris without her explicit informed consent. About this, my mind hasn’t changed! I do think new follow-up studies will be useful for doing best-guess gender assignments in cases of intersex—they may help us understand which gender to assign preliminarily in various cases of partial AIS, for example—but all the evidence in the world in favor of the “effectiveness” of a treatment doesn’t make it ethical.
So I end up realizing that what I’m looking for in medicine today—at least around the treatment of children born with socially-challenging anatomies—is a radical change. I’m no longer looking to bring the treatment of intersex into line with other forms of medicine. It’s frighteningly close to that already. Instead, what I’m wishing for—what I hope I’m starting to work towards—is a radical medicine that recognizes and actively confronts the oppressive nature of social anatomical norms and questions the use of medicine to uphold, and even advance, particularly oppressive norms. In this vision, we would not ban or abandon all “normalizing” procedures. But doctors and nurses and social workers who work with these families would begin engaging in a conscious dialogue of the meaning of anatomy and the implications of “normalizing” procedures.
I suggest this vision today because of what I’ve learned from individuals and families who have lived through various kinds of treatment protocols. What I find almost universal among them is the story of how liberating it was for them to realize fully the political nature of their oppression and the complex ways that love is played out under oppression. As a historian, I shouldn’t be surprised. Medicine historically sanctioned the oppression of women, blacks, lesbian women and gay men, people with cancer and AIDS. (Barron Lerner’s excellent book on this history breast cancer activism reads like a primer for intersex activism.7) Part of the liberation of these groups involved a rejection of the more oppressive forms of medicine and science once thought (by some) simply beneficent. Part of the liberation involved medical professionals joining in the struggle for reform. The best thing is, if history holds true to these analogies, intersex activism may well improve other realms of medical care, too.
On a final reflective note, only very recently have I learned how very lucky I am to be at Michigan State University doing this work. Perhaps my biggest stash of naivete in 1998 consisted in thinking I could have pursued this work anywhere. I now understand MSU—particularly the Center for Ethics and Lyman Briggs—to be a uniquely safe and supportive environment for the work I have done as a scholar who is also an activist with a long learning curve.
At Michigan State, Alice Dreger, Ph.D., is Associate Professor of Science and Technology Studies at the Lyman Briggs School of Science (College of Natural Science) and Faculty Associate to the Center for Ethics and Humanities in the Life Sciences (College of Human Medicine)
1 Alice Domurat Dreger, ‘Ambiguous Sex’—or Ambivalent Medicine? Ethical Problems in the Treatment of Intersexuality, The Hastings Center Report, vol. 28, no. 3, May/June 1998, pp. 24-35.
2 George J. Annas, “Siamese Twins: Killing One to Save the Other,” The Hastings Center Report 17 (April, 1987): 27-29.
3 Alice Domurat Dreger, Hermaphrodites and the Medical Invention of Sex (Harvard University Press, 1998).
4 I’m indebted to Joel Frader of Northwestern University for educating me on this from the point of view of a pediatrician-ethicist.
5 Arthur W. Frank, The Wounded Storyteller: Body, Illness, and Ethics (University of Chicago Press, 1995),
6 Adrienne Asch, “Distracted by Disability,” Cambridge Quarterly of Healthcare Ethics, 7 (1998): 77-87.
7 Barron Lerner, The Breast Cancer Wars: Hope, Fear, and the Pursuit of a Cure in Twentieth Century America (Oxford University Press, 2003).
8 Anita Natarajan, Medical ethics and truth telling in the case of androgen insensitivity syndrome Canadian Medical Association Journal 1996; 154: 568-570