The Microethics of Informed Consent for Early Feminizing Surgery in Congenital Adrenal Hyperplasia

The Microethics of Informed Consent for Early Feminizing Surgery in Congenital Adrenal Hyperplasia
Katharine B. Dalke, Arlene B. Baratz
Journal of Pediatric Ethics, Spring 2021
Open Access
Abstract
Early surgery for genital difference in 46,XX congenital adrenal hyperplasia (CAH) is highly controversial, with contested evidence of benefits and risks. While professional urological societies and a parent-led CAH advocacy group maintain that families should have the option to consent for surgery for their child, former patients, intersex-led advocacy groups, and human rights and medical organizations denounce surgery on unconsenting infants for non-life-threatening genital variations. In the absence of clear data, clinicians are encouraged to engage in shared decision making with parents to obtain their fully informed consent. Unexplored microethics issues regarding clinicians’ implicit bias for treatments may interfere with their ability to obtain parents’ fully informed consent in this setting. Implicit bias may be inferred from parents’ experiences and from official and unofficial communications from clinicians.