Medical science: police the borders of identity first, reduce the risk of CAH second

February 20, 2010

The Organisation Intersex International (OII) has posted a position statement on the use of Dexamethasone during pregnancy, expressing its concerns about the experimental use of this synthetic steroid hormone currently underway in the U.S.

OII is asking its friends and allies to read the letter that Drs. Feder, Dreger, Lindemann and other bioethicists have signed to request an investigation into the situation.

It seems that at least two Medical Centers are taking advantage of a loophole in established medical practice to carry out “a de facto clinical trial involving many hundreds of patients”. Included in this unofficial research project are pregnant women who may give birth to girls with Congenital Adrenal Hyperplasia (CAH), a family of inherited disorders affecting the adrenal gland which can result in life-threatening imbalances in salt and hormone levels in newborn babies. In some cases, CAH can alter development of primary or secondary sex characteristics in some children, which may result in ambiguous genitalia. (See also)

The letter of concern produced by the bioethicists is clear that:

[…] prenatal dexamethasone treatment results in detrimental changes to the brains of children,[…] over 90% of whom will receive no benefit from this treatment. (Only 1 in 8 fetuses started on this treatment are actually 46,XX CAH, and of the 1/8 who are, 20% will not benefit from the treatment.) Children exposed prenatally to dexamethasone for CAH show problems with working memory, verbal processing, and anxiety. […] Therefore, contrary to the apparent claims aimed at prospective patients, dexamethasone treatment cannot responsibly be characterized as benign.

Despite knowledge of risks to fetal development, it does not appear that physicians prescribing this drug to hundreds of women have sought IRB approval for clinical trials of dexamethasone for the purposes of minimizing genital virilization in 46,XX females at risk for CAH in utero. Pregnant women who have been prescribed dexamethasone external to IRB-approved trials may not have provided fully informed consent as would happen formally under an IRB-approved trial. Public descriptions of this drug as safe and effective may have misled some women to believe the use is FDA-approved, when it is not.

The bioethecists group’s letter calls for an investigation into possible regulatory violations and believes that “this experimental treatment is not warranted and should not be pursued even in prospective clinical trials”. I’ll go a step further and say that it looks like another attempt by medical science to shape identities according to the received limits of a socially acceptable binary, in which the human rights of the child are relegated to a very distant second place in pursuit of enforced normalisation.


One Response to “Medical science: police the borders of identity first, reduce the risk of CAH second”

  1. Thanks very much for this article and I appreciate your analysis, especially the conclusion. You have gone to the very heart of the matter, which is not about making this unethical practice “safe”, but to put the human rights of the child above enforced normalisation.

    Kind regards,

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