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Prenatal Dexamethasone for Congenital Adrenal Hyperplasia an Ethics Canary in the Modern Medical Mine

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Prenatal Dexamethasone for Congenital Adrenal Hyperplasia an Ethics Canary in the Modern Medical Mine Bioethical Inquiry (2012) 9:277–294 DOI 10.1007/s11673-012-9384-9 ORIGINAL RESEARCH Prenatal Dexamethasone for Congenital Adrenal Hyperplasia An Ethics Canary in the Modern Medical Mine Alice Dreger & Ellen K. Feder & Anne Tamar-Mattis Received: 11 April 2012 /Accepted: 14 May 2012 /Published online: 31 July 2012 # The Author(s) 2012. This article is published with open access at Springerlink.com Abstract Following extensive examination of pub- prevention of benign behavioral sex variations. Critical lished and unpublished materials, we provide a history attention is directed at recent investigations by the U.S. of the use of dexamethasone in pregnant women at risk Food and Drug Administration (FDA) and Office of of carrying a female fetus affected by congenital adrenal Human Research Protections (OHRP); we argue that hyperplasia (CAH). This intervention has been aimed at the weak and unsupported conclusions of these inves- preventing development of ambiguous genitalia, the tigations indicate major gaps in the systems meant to urogenital sinus, tomboyism, and lesbianism. We map protect subjects of high-risk medical research. out ethical problems in this history, including: mislead- ing promotion to physicians and CAH-affected families; Keywords Congenital adrenal hyperplasia . de facto experimentation without the necessary protec- Dexamethasone . Medical ethics . Gender identity. tions of approved research; troubling parallels to the Sexual orientation . Human subjects research history of prenatal use of diethylstilbestrol (DES); and the use of medicine and public monies to attempt Introduction/Our Backgrounds In this article, we provide a condensed history of the use of prenatal dexamethasone for congenital adrenal hyper- A. Dreger (*) Clinical Medical Humanities and Bioethics, plasia, with an eye toward the ethically problematic Program in Medical Humanities and Bioethics, aspects of this history. Congenital adrenal hyperplasia Feinberg School of Medicine, Northwestern University, (CAH) is a disease of the endocrine system that can 750 N Lake Shore Dr., Suite 625, cause virilization (i.e., development of masculine traits) Chicago, IL 60611, USA e-mail: [email protected] in female fetuses. In an attempt to prevent CAH-affected female fetuses from developing in a sexually atypical E. K. Feder fashion, some physicians treat pregnant women “at risk” Department of Philosophy and Religion, for having an affected daughter with the steroid dexa- American University, Washington, DC, USA methasone. This intervention starts as soon as pregnan- e-mail: [email protected] cy is confirmed and continues throughout the pregnancy if the fetus is ultimately diagnosed as a CAH-affected A. Tamar-Mattis female. If—several weeks into the dosing—the fetus is Advocates for Informed Choice, Cotati, CA, USA determined to be male or not CAH-affected, the inter- e-mail: [email protected] vention is immediately stopped, because the intention is 278 Bioethical Inquiry (2012) 9:277–294 only to alter the course of development in CAH-affected meta-analysis covered only 325 pregnancies. Even females. more stunning, the meta-analysis revealed, “there This use of dexamethasone was first described in1984 were no data on long-term follow-up of physical and inTheJournalofPediatricsbyMichelDavidandMague- metabolic outcomes in children exposed to dexameth- lone Forest, French clinician-researchers. David and For- asone” prenatally for CAH (Fernández-Balsells et al. est reported apparent effectiveness of prenatal 2010, 436, emphasis added). It was not that the data dexamethasone in eliminating genital virilization in a about long-term physical and metabolic outcomes single girl affected by CAH (David and Forest 1984). In were unclear; there simply were none available. the nearly three decades since David and Forest’spaper, Today, some clinicians promote prenatal dexametha- many specialists have come to believe that prenatal dexa- sone for CAH as “an excellent example of pharmaco- methasone for CAH constitutes the standard of care. A logical therapy during pregnancy” (Rosner et al. 2006, 2000–2001 survey of members of the European Society 803) and even as “a paradigm of prenatal diagnosis and for Paediatric Endocrinology, representing 125 institu- treatment” (Nimkarn and New 2010a, 5). Yet the Endo- tions, found that, “[i]n 57 % of the centres prenatal diag- crine Society Task Force that had commissioned the nosis and treatment [of CAH with dexamethasone] are 2010 meta-analysis concluded: “The evidence regarding routine” (Riepe et al. 2002, 199). A 2010 Continuing fetal and maternal sequelae … is of low or very low Medical Education review article in the Obstetrical and quality due to methodological limitations and sample Gynecological Survey concluded: “Given the data avail- sizes” (Speiser et al. 2010a, 4137). This would hardly able at this moment, antenatal treatment with corticoste- seem to qualify prenatal dexamethasone for CAH as “an roids is recommended” (Vosand Bruinse 2010,203). excellent example” or a “paradigm” of a prenatal phar- But what data are “available at this moment” such macological intervention. Indeed, for lack of quality that prenatal dexamethasone for CAH can be recom- clinical studies, the 2010 Task Force could not even mended to obstetricians, and recommended by them to say with any confidence whether prenatal dexametha- prospective patients? sone works to reduce genital virilization. Notice the A systematic review and meta-analysis of this inter- specific qualifications included in the Task Force’sstate- vention, published in 2010 in Clinical Endocrinology, ment on efficacy: “[T]he groups advocating and indicated that a search of the literature “identified 1083 performing prenatal treatment appear to agree that it candidate studies for review; of which, only four studies is effective in reducing and often eliminating virilization were confirmed eligible” for serious scientific consider- of female fetal genitalia and that the success rate is about ation (Fernández-Balsells et al. 2010, 438). That is to say, 80–85 %” (Speiser et al. 2010a,4138,emphasis added). as late as 2010, less than one half of one percent of Regardless of some people’s enthusiastic endorse- published “studies” of this intervention were regarded ments of the intervention, we show below that ethical as being of high enough quality to provide meaningful debates within medicine about prenatal dexametha- data for a meta-analysis. Even these four studies were of sone for CAH are actually not new. Those internal low quality: debates, however, have focused on potential risks and benefits to mothers and children exposed. There All the eligible studies were observational and are a number of other ethical problems in the history of were conducted by two groups of investigators this intervention also deserving of attention, including: (one from the US and one from Europe). … Stud- ies lacked details regarding the use of methodo- de facto experimentation on fetuses and pregnant logical features that protect against bias. None of women, largely outside of prospective long-term trials the studies reported blinding of the outcome asses- and without adequate informed consent; failure to sors to the exposure (i.e., the researchers estimat- appropriately collect and publish evidence when pro- ing each patient’s degree of virilization). Loss to moting and providing a high-risk intervention; use of follow-up was, in most cases, substantial medicine and public monies for research to prevent (Fernández-Balsells et al. 2010,438). benign behavioral sex variations, including tomboy- ism and lesbianism (cf. Murphy 1997); and inadequa- In spite of at least a thousand pregnant women cy in the United States of systems designed to protect likely having been exposed by the time of the review, subjects of medical experimentation, including espe- the four studies judged worthy of inclusion in the cially pregnant women and their offspring. Bioethical Inquiry (2012) 9:277–294 279 In the United States, the use of prenatal dexametha- than 600 pregnant women with dexamethasone in an sone remains “off-label.” This means that the indication attempt to prevent virilization in CAH-affected female has never received approval by the Food and Drug fetuses (Kitzinger 2003), putting her efforts in this area Administration (FDA).1 Nonetheless, we want to be well beyond any other clinical researcher’s (see also clear: The problem we see with the use of prenatal New et al. 2001). Dreger’s preliminary research indi- dexamethasone for CAH is not per se that it is an off- cated that, even while obtaining a federal grant prom- label use; it is rather that—as this paper documents— ising to determine the actual safety and efficacy of prenatal dexamethasone for CAH has sometimes been prenatal dexamethasone for CAH through retrospec- promoted to prospective patients and clinicians in mis- tive follow-up studies, New was functioning as a leading ways, and sometimes promoted for uses that are uniquely aggressive promoter of the intervention not legitimately medical (e.g., for the prevention of among parents and clinicians, repeatedly describing tomboyism and lesbianism). Furthermore, this interven- this intervention as “safe for mother and child” (New tion—intended to alter the course of fetal development 2010a, ¶4). But when Dreger and Vilain attempted to —has been “studied” in ways so slipshod as to breach ask New about informed consent, both were rebuffed professional standards of medical ethics. by New. Indeed,
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