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Cited by 43Sexual Differentiation and DisordersEthics and bioethics in healthcareEthics in Clinical Research

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

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Dreger, Alice, Feder, Ellen K., Tamar-Mattis, Anne·2012·Journal of Bioethical Inquiry
DOI 10.1007/s11673-012-9384-9PMC PMC3416978
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Abstract

Following extensive examination of published and unpublished materials, we provide a history of the use of dexamethasone in pregnant women at risk of carrying a female fetus affected by congenital adrenal hyperplasia (CAH). This intervention has been aimed at preventing development of ambiguous genitalia, the urogenital sinus, tomboyism, and lesbianism. We map out ethical problems in this history, including: misleading promotion to physicians and CAH-affected families; de facto experimentation without the necessary protections of approved research; troubling parallels to the history of prenatal use of diethylstilbestrol (DES); and the use of medicine and public monies to attempt prevention of benign behavioral sex variations. Critical attention is directed at recent investigations by the U.S. Food and Drug Administration (FDA) and Office of Human Research Protections (OHRP); we argue that the weak and unsupported conclusions of these investigations indicate major gaps in the systems meant to protect subjects of high-risk medical research.

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Cited by

Sorted by citations

Authors
Dreger, A., Feder, E. K., & Tamar-Mattis, A.
Affiliations
  • Northwestern University (US)
  • American University (US)
Corresponding author
Dreger, Alice
ORCID
Venue
Journal of Bioethical Inquiry
Publisher
Springer Science and Business Media LLC
Published
2012-07-31
Volume
9
Issue
3
Pages
277-294
ISSN
  • 1176-7529 (ISSN-L)
  • 1872-4353
DOI
10.1007/s11673-012-9384-9
PMC
PMC3416978
OpenAlex
W2011682264
Cited by
43
References
7
Citations by year
2025: 2 · 2024: 2 · 2023: 2 · 2022: 1 · 2021: 1 · 2020: 5 · 2019: 3 · 2018: 4 · 2017: 2 · 2016: 4 · 2015: 5 · 2014: 2 · 2013: 9 · 2012: 1
FWCI
2.19
Type
journal article
Language
en
Open access
Licence
Locations
  • Journal of Bioethical Inquiry (publishedVersion, cc-by)
  • PubMed Central (publishedVersion, cc-by)
  • PubMed (publishedVersion)
Funders
Northwestern University
Topics
  • Life Sciences › Biochemistry, Genetics and Molecular Biology › Molecular Biology › Sexual Differentiation and Disorders
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics and bioethics in healthcare
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
Keywords
prenatal dexamethasone, congenital adrenal hyperplasia, ambiguous genitalia, history of medicine, research ethics, informed consent, diethylstilbestrol, urogenital sinus, FDA investigation, Office for Human Research Protections, research protection, pregnant women

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