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Advocates for Informed Choice

About: Advocates for Informed Choice is a based out in . It is known for research contribution in the topics: Athletes & Agency (sociology). The organization has 1 authors who have published 7 publications receiving 111 citations.

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Journal ArticleDOI
TL;DR: A history of the use of dexamethasone in pregnant women at risk of carrying a female fetus affected by congenital adrenal hyperplasia (CAH) is provided and ethical problems are mapped out.
Abstract: Following extensive examination of published and unpublished materials, we provide a history of the use of dexamethasone in pregnant women at risk of carrying a female fetus affected by congenital adrenal hyperplasia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.

45 citations

Journal ArticleDOI
TL;DR: A holistic approach to emotionally and cognitively informed consent in this setting is proposed, with inclusion of psychosocial and peer support from the earliest stages.
Abstract: Clinicians who utilise recommended best practices for informed consent may be surprised that families in support groups frequently report that some physicians continue to recommend certain irreversible treatments for children with differences of sex development (DSD) without adequate psychosocial support for cognitive processing of information necessary to decision-making. Such practice is contrary to recommendations in the 2006 Consensus Statement on Management of Intersex Disorders. When psychological preparation is lacking for aspects of DSD such as uncertainty about future gender identity, a false sense of urgency can propel parents to agree to genital surgery or removal of gonads without adequate understanding of the long-term consequences in adulthood. If physicians are uncomfortable discussing gender and sexual issues, they may not explore the feasibility of, or offer support for, alternative approaches towards sex atypicality. Families may draw unrealistic conclusions regarding the extent to which such interventions will relieve their distress and improve quality of life for the child and family. Failing to offer adequate psychosocial support to parents making irreversible decisions about DSD can raise significant ethical and legal concerns. Families may experience regret and anger when they make decisions on the basis of limited or even biased information while in an emotionally vulnerable state. Children’s autonomy is violated when they are completely excluded from decision-making. We propose adoption of a holistic approach to emotionally and cognitively informed consent in this setting, with inclusion of psychosocial and peer support from the earliest stages.

37 citations

Journal ArticleDOI
TL;DR: Note published in Journal of Clinical Endocrinology and Metabolism on 01 March 2015, freely available at: https://doi.org/10.1210/jc.2014-3206.
Abstract: Note published in Journal of Clinical Endocrinology and Metabolism on 01 March 2015, freely available at: https://doi.org/10.1210/jc.2014-3206.

23 citations

Journal ArticleDOI
TL;DR: The major legal concerns raised in the letter are not about off-label prescription; they are about whether Dr. New's activities meet legal standards for human subject research and informed consent.
Abstract: The article by McCullough, Chervenak, Brent, and Hippen (2010) is strongly worded, but fails to address the most significant ethical questions raised by Dreger and colleagues in their Letter of Con...

4 citations


Authors

Showing all 1 results

NameH-indexPapersCitations
Anne Tamar-Mattis613199
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Performance
Metrics
No. of papers from the Institution in previous years
YearPapers
20151
20143
20131
20121
20101