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The campaign against the large-scale prenatal administration of off-label medication designed to prevent "genital virilization" (enlargement of clitoris) among female fetuses with congenital adrenal hyperplasia (CAH) is building a momentum.
The questionable practice 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. In fact, the treatment is terminated when the fetus is found to be genetically male.
Earlier this month, a group of bioethicists and other scholars signed a letter of concern to Federal Drugs Administration, Department of Health and Human Services, and other authorities, suggesting that the practice amount to an unapproved human subject research in violation of established standards. Advocates for Informed Choice, a legal organization working for children born with intersex conditions and their families followed with its own letter of concern, as did a group of adult intersex activists.
Additionally, Hilde Lindemann, Ellen Feder and Alice Dreger have written an article for Bioethics Forum, an online publication of Hastings Center, which also published Intersex Initiative director Emi Koyama's essay on bioethics, which seeks to put the controversy in a larger context.
For more information, read fetaldex.org, a site created by Alice Dreger to provide information about this problematic practice and challenges against it.
Update (Oct. 2010): Endocrine Society issued a recommendation against prenatal dexamethasone treatment for fetuses suspected of having CAH. Read more at Endocrine Today.
Posted by Emi on Feb 18, 2010