|The symbol for intersexed implies a range of possibilities beyond male and female.|
As I approach the third trimester of my first pregnancy, I’m more aware than ever of how early we begin gendering our children. My husband and I decided at the outset to wait until our child is born to learn whether we’ll have a daughter or son – a decision we made in part to avoid getting overwhelmed with lacy pink dresses if we’re set to have a girl, and partially motivated by my father’s caution that as soon as you know the sex, you start building expectations about what you want the baby to be like. Though it’s not easy to push aside the curiosity, we’re attempting to focus instead on what kind of parents we will be. Yet, I must admit that it’s harder than I expected. I recently purchased a pack of “boy’s bibs” because it included all the primary colors (seriously, boys get all the primary colors?).
So I deeply sympathize with women who are told they have a high likelihood of having a child with congenital adrenal hyperplasia (CAH), a genetic condition that can cause female fetuses to develop genitals that appear somewhat masculine. Gendering is, unfortunately, central to the process of having a baby and “What’s the sex?” gets asked hundreds of times in any pregnancy. Knowing that your child will not easily fit into these socially built boxes can be deeply disheartening.
Hoping to help expectant parents avoid this struggle, many doctors have been prescribing an off-label use of dexamethasone (DEX) for women at risk of having a child with CAH. However, the recent findings highlighted in an essay by Alice Dreger, Ellen K. Feder, and Anne Tamar-Mattis make a convincing case that in these efforts to help, doctors are irresponsibly and unethically encouraging women to risk their own health and that of their baby-to-be [for news coverage, see: 1, 2, 3].
In this month’s issue of Bioethical Inquiry, Dreger et al. describe in detail an upsetting number of reasons not to promote this use of DEX and report their struggles since 2010 to elicit equal concern from the Office of Human Research Protections and the Food and Drug Administration. Many clinicians may be responsible for this increasingly standardized application of DEX, but the authors focus their study on one particularly egregious offender, pediatric endocrinologist Maria New at the Mount Sinai School of Medicine, who has used this “treatment” on somewhere between 600 and 2,144 fetuses.
Dreger et al.’s essay really must be read in full rather than summarized because the authors work meticulously to document both the serious risks of this usage of DEX and the ethical lapses of judgment by Dr. New. Much of the essay is based upon data obtained using the Freedom of Information Act, but even still, Dreger has had to sue (a case that is ongoing) to obtain remaining files from the OHRP and FDA.
Largely, the risks of DEX treatment are unknown, and Dreger et al. detail the inadequacy of previous clinical studies and the complete lack of reliable long-term data. A Swedish team recently terminated its study of this application of DEX, finding the adverse effects too worrisome to overlook. In a study of 43 children:
… eight severe adverse events were noted in the treated group, compared with one in the control group. Three children failed to thrive during the first year of life; in addition, one had developmental delay and hypospadias; one had hydrocephalus; two girls were born small for gestational age, and one of these girls was later diagnosed with mental retardation; and one child had sever mood fluctuations that caused hospital admission.
Other effects included reduced scholastic ability, increased social anxiety, and more feminized behavior in boys. This study should not be taken as a proof in and of itself, but the findings are certainly alarming enough to demand more rigorous studies before DEX use continues.
The point not to miss is this: yes, CAH can cause serious medical problems in some cases, but DEX doesn’t eliminate CAH, it merely aims to prevent the appearance of masculine genitalia in females, and for some clinicians like New, non-heteronormative behavior. In her past work, Alice Dreger has traced the history of medical treatment of the intersexed, arguing that too often what gets deemed “medical necessity” is more accurately about social norms – what we expect the male and female body to look like and what forms of sex we are expected to have. Despite the successes of intersexed activists in raising questions about medicalization, this latest update suggests that our efforts to help through medical treatment may still be causing more harm than good.
One could argue that the uncertainty surrounding risks is outweighed by the need to prevent ambiguous or masculinized genitalia. However, this assumes that the fetus being treated is guaranteed to have CAH, which is not the case. Many clinicians, New included, put women at risk of having a child with CAH on DEX as soon as they find out they are pregnant. Then, if it turns out that the fetus is male or is not affected by CAH, the treatment is stopped. That pregnant women who may not even have an affected child are being encouraged to add “60 to 100 times the normal level of glucocortoicoids” should leave us deeply concerned.
Apparently, we have learned very little from the historic misuse of DES, which put girls and young women whose mothers had been encouraged to use diethylstilbestrol (DES) during their pregnancies to prevent miscarriage at greatly increased risk of cancer. This too was a practice that continued despite early research suggesting the inefficacy and risks of the treatment.
Yet, Dreger et al. point out that there’s something even more unsettling here; the intention of DES treatment was preventing fetal death, but DEX seems more tied to treating social and behavioral difference than medical problems.
Normalcy still has a powerful pull, and the rise of this dangerous method for fetal engineering suggests that treatment for the intersexed still needs to sort out when “medical necessity” and aesthetic preferences get murkily mixed together.
Posted in Bioethics, Biotech & Pharma, Disability, Emily Beitiks' Blog Posts , LGBTQI, Reproductive Justice, Health & Rights, Sequencing & Genomics
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Comment by D. Ellis, Aug 17th, 2012 11:11pm
Very informative posting here. Thank you for sharing this information with everyone who has a child born intersexed in some way or other. Thanks also for helping parents of these precious children know what to expect and what not to do medicine wise during their pregnancies for fear of harm to the mother's themselves and/or their precious offspring.
Comment by Maria Krasinski, Aug 17th, 2012 1:54pm
If you'd like to talk to me and other women with CAH, i'd be happy to and i can arrange it. Short sweet version. Its hard, but not the end of the world. With hydrocortisone we can, and do, lead completely normal lives.