Emi Koyama just posted a really great article on the Bioethics Forum site reviewing a research practice of intersex fetus treatment using a synthetic hormone and the Ashley case. She says, “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” and “After all, what is the relevance of risk/benefit analysis when the intended goal is unethical?”
Emi writes toward the end of her wonderful article, “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.”
That reminds me. I have a small piece of advice for anyone who has a chance to read Dr. Adrienne Asch’s commentary to the Diekema & Fost AJOB article. Please don’t miss the footnote on Page 46. Dr. Asch is a member of the Seattle Growth Attenuation and Ethics Working Group and signed the group’s statement that claimed growth attenuation to be ethically admissible for severely disabled children in general without court orders, something Dr. Wilfond called “a compromise” the group had reached. But Dr. Asch explains in the footnote that she signed it because she “supported the process through which the statement was produced” and not because she supported all its conclusion. But normally, signing a document means that you support its contents including the conclusion, whatever process there was in its production. And whatever excuse you might have. This footnote leaves me really curious about what happened in the working group discussions.