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Original Articles

Emotionally and cognitively informed consent for clinical care for differences of sex development

, , &
Pages 44-55
Received 30 Sep 2011
Accepted 15 Feb 2012
Published online: 17 Sep 2013

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.

Additional information

Notes on contributors

Anne Tamar-Mattis

Anne Tamar-Mattis, JD, is the Executive Director of Advocates for Informed Choice, the first organisation in the country focused on legal advocacy on behalf of children with DSD. She is also an adjunct professor at the University of California, Berkeley, School of Law.

Arlene Baratz

Arlene Baratz, MD, is the mother of two adult daughters with CAIS and a medical adviser and board member for multiple advocacy groups including Androgen Insensitivity Syndrome/Disorders of Sex Development (AIS/DSD) Support Group, Advocates for Informed Choice (AIC) and Accord Alliance.

Katharine Baratz Dalke

Katharine Baratz Dalke, MD MBE, is a resident in Psychiatry at the Hospital of the University of Pennsylvania, is affected by CAIS, acts as Co-President of the Board of Directors of Advocates for Informed Choice, and is a member of the medical advisory group to the AIS/DSD Support Group.

Katrina Karkazis

Katrina Karkazis, PhD, MPH is a Senior Research Scholar at the Stanford Center for Biomedical Ethics and the author of Fixing Sex: Intersex, Medical Authority, and Lived Experience (Duke University Press, 2008).
 

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