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This is precisely what I was worried about the field of bioethics

Date: March 15, 2010

After a month or two of scholars and intersex activists challenging the prenatal dexamethasone treatment on fetuses suspected of having congenital adrenal hyperplasia (CAH) designed to prevent the virilization of clitoris, the pro-dex doctors are starting to publicly defend the controversial treatment.

In Bioethics Forum, a blog published by Hastings Center and where Hilde Lindenmann, Ellen Feder, and Alice Dreger have previously published a piece criticizing the treatment, two articles defending the treatment have been published.

In addition, there is a research review paper in the current issue of Obstetrics and Gynecology Survey which apparently suggests that the dexamethasone treatment has benefits (But what is the “benefit” they are talking about? Not being born intersex?).

I had also written my own response, which was posted on Bioethics Forum, to the scholars’ letter of concern about dexamethasone treatment (“letter of concern from bioethicists”) to express my broader concern about the field of bioethics and role it plays in legitimizing ethically troubling medical treatments designed to address social problems.

While I haven’t been able to read the Obstetrics and Gynecology Survey piece yet (although it seems to be a straightforward review paper), both of the responses in Bioethics Forum seem to be exactly the examples of the problems with the field of bioethics that I was trying to address in my own piece.

Lantos epitomizes the tendency for pediatric bioethicists to endorse “let the parents decide” model whenever an ethical question is raised about any particular treatment, rather than seriously considering social and ethical implications of such treatment. It’s interesting that he calls for the “marketplace of ideas and marketplace of medical treatment” to sort it out, as it apparently would mean that bioethicists should have an opinion one way or another only when evidence is completely on one side of the debate, a scenario that does not require bioethicists in the first place. Who needs bioethicists if marketplace is competently guided by the invisible hands of God?

Diamond et al. (I only recognize the names of Diamond and Spack among them) embodies another problem with the bioethics, that is the main concern of my essay: bioethics’ obsession with regulatory mechanisms and procedures rather than the actual ethical considerations. I feared that Alice Dreger’s and others’ critique of Maria New’s practice as an un-authorized, un-supervised human subject research involving off-lable medication would only lead to a kinder, gentler version of the same practice under full IRB review, and that appears to be precisely what Diamond et al. are calling for. That is definitely an improvement over the current situation, and perhaps it’s a step we must go through, but I really don’t want to wait for ten or more years before the registry begins to produce useful information.

I want to write more, but I have to finish writing grant proposal to get a new group for queer people with developmental disabilities funded due Monday (and it’s 12:30am on Monday) and get ready to fly out to the East Coast in less than 24 hours…

By the way, if you happen to be near Providence, I’m presenting a workshop at Brown University on Wednesday, March 17th as part of Brown’s Pride Series 2010. The workshop is titled “Transgender inclusion, or Demilitarizing the Borderlands of Binary Gender System.” See their site for more info.

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