Intersex Initiative and I join other intersex activists, bioethicists, scholars, and Advocates for Informed Choice a national legal organization that advocates for children born with intersex conditions (or disorders of sex development) in challenging the apparent large-scale "research" involving hundreds of pregnant women and their fetuses without institutional review board approval or oversight.
The questionable "research" practice, discussed recently in Bioethics Forum, involves the off-label prenatal administration of dexamethasone, a synthetic hormone, to women who are carrying a fetus suspected of having congenital adrenal hyperplasia (CAH). While CAH often requires life-long monitoring and medication, the prenatal dexamethasone treatment does not alter any of the medical concerns. It is solely intended to address a cosmetic issue, which is to prevent the fetus girls from developing an enlarged clitoris.
A letter of concern, signed by bioethicists and other scholars, asks whether de-facto human subject research is being conducted without IRB oversight, and whether the main practitioner of this treatment is providing less than complete information about what it accomplishes and its potentially hazardous effects. We agree with their assessment, and endorse their call for an official investigation and redress.
That said, I confess that I have become increasingly suspicious of the field of bioethics and the role its experts play in the larger machinery of medical science. My suspicion began when I became involved in the controversy over the so-called "Ashley X" case, in which a six-year old girl with severe developmental and ambulatory disabilities was put through a series of medical treatments that involved hormone therapy to stop her physical growth, along with the removal of her breast buds and uterus.
In 2007, lawyers from Washington Protection and Advocacy System (now Disability Rights Washington) concluded that the procedures violated Washington state laws because it sterilized Ashley without court approval. University of Washington's Seattle Children's Hospital acknowledged the error, and pledged to change course. It seemed like a major victory for the disability rights movement, which viewed the treatment as an erosion of the human rights of people with disabilities, especially women with disabilities who used to be routinely sterilized without consent.
But the story did not end there: the university established a working group consisting of experts from various fields of medicine, as well as legal scholars, disability theorists, and bioethicists, which in less than two years publicly announced a new standard and cleared the way for hospitals to offer "growth attenuation" as an option for parents requesting such treatment for their children. According to Ashley's parents, who quote an e-mail they received from a participant at a recent pediatrics conference at least 10 doctors around the country have offered growth attenuation "therapy."
As with the challenge to the Ashley treatment, scholars may be right to challenge the mass administration of dexamethasone as a case of unauthorized human subject research in violation of institutional policies and professional code of ethics. But I feel that these criticisms do not go far enough to question the ideologies about the female body and normalcy that such treatments simultaneously presume and uphold.
The scholars' statement alleges that the doctor administering dexamethasone to hundreds of women violated regulatory procedures for research oversight, but from my perspective, this concern seems, at best, peripheral.
While the scholars point out that the intended "benefit" of the dexamethasone administration is "to avoid a cosmetic issue associated with CAH," it does not take a stance on the ethical and social implication of avoiding such cosmetic issues in the first place. Since genital virilization is itself not an illness requiring medical intervention, and society does not generally endorse using off-label medications to alter the shape of medically healthy fetal body parts, why is it that the central criticism of this procedure is that it lacks IRB oversight?
Another troubling aspect of the treatment is that it exemplifies the extent to which pregnant women in our society are expected to sacrifice their own needs and wants to produce a perfect baby. Legitimate research on the long-term effects of prenatal dexamethasone exposure in children is still in early stages (with some indication that it may be linked to problems with cognitive development), but it has been established that many women taking dexamethasone suffer considerably, spending much of their pregnancy feeling sick. Still, our society expects pregnant women to do what medical experts say it takes to give birth to a perfect baby, and they are often blamed when something goes "wrong."
The scholars’ letter does argue that women should be fully informed of "risks they assume for themselves and on behalf of their future children," but the emphasis is clearly on the fetuses. Thus it does not question the unreasonable expectation that society places on pregnant women to be selfless incubator for their fetuses.
I oppose the dexamethasone treatment primarily because its goal – suppressing natural human variations that do not cause illness or pain – is suspect, and because it preserves a social and cultural environment that is inhospitable for people with intersex conditions. In particular, because women are typically advised to take dexamethasone when they have already given birth to an older child with CAH, I worry what the treatment would mean for the older child, especially if the child is an older sister. I am further concerned about the enormous pressure pregnant women are under to produce perfect babies, and the moral judgment that follows the birth of a child with disabilities or atypical physique.
I applaud signers of the "letter of concern" for calling attention to this problematic medical "treatment," but I fear how the situation might appear to someone seeking the treatment, or even to a casual observer. On one side is a courageous doctor giving immediate assistance to women without being bogged down by bureaucracies; on the other is a group of ivory tower academics nitpicking on technicality.
The investigation into the "Ashley treatment" cumulated in the admission by the University of Washington and Seattle Children's Hospital that they violated the state anti-sterilization law. But it did not lead to the end of or greater restraint on the questionable medical intervention designed to permanently infantilize young children with severe developmental disabilities.
I fear that the campaign to hold the main propagator of the dexamethasone treatment accountable would, if not accompanied by sustained challenges to more fundamental problems with this treatment, also result in creating a more "ethical" means of continuing the treatment – that is, a means that complies better with the established procedures and codes of ethics – rather than stopping it.
I am starting to question seriously what role bioethics and bioethicists play in medical controversies involving children who cannot make decisions for themselves, and parents, especially mothers, who are forced to make the decision under complicated social, cultural and economic circumstances – growth attenuation is promoted as a solution to parents' hardship of taking care of their child without adequate public assistance. Does a medical treatment become "unethical" because it violates an established policy or law, or because it accommodates and abets social prejudices against those deemed "abnormal." rather than addressing a legitimate medical problem?
I feel that bioethics is moving away from the disability rights movement, women's health movement, and other movements seeking social justice in medicine, and instead is offering consulting services and grand rounds speakers to smooth things over so that the same problematic treatments can continue to be performed "more ethically." "We don't tell doctors what to do," I heard one bioethicist explain at a symposium on growth attenuation therapy. "We simply advise how it should be done."
I know that many of the scholars who signed the letter on the dexamethasone treatment do, in fact, tell doctors what to do (and what not to do) out of their commitment for the rights of people with disabilities, women, children, and others often mistreated by medicine. I believe that several of them would agree with me that the prenatal application of any medical technology solely to prevent socially stigmatized cosmetic variation is wrong, regardless of the toxicity of the treatment. After all, what is the relevance of risk/benefit analysis when the intended goal is unethical?
In that sense, I trust many of these scholars and their judgment. But that was how I felt about the disability theorists who were part of the working group that ended up helping to polish up growth attenuation as a legitimate treatment. Continued vigilance is needed to make sure that bioethics maintains a commitment to social and economic justice and rejects involuntary body modification as a substitute for overcoming societal prejudices.
Emi Koyama is the director of Intersex Initiative, an advocacy organization for people born with intersex conditions.