The medical management of human intersex: An evaluation of parent-clinician communication about treatment options

The surgical and hormonal management of intersexed children is a much more common component of pediatric care in Canada than many people realize. Intersex conditions, where noticeably atypical genitalia is deemed to require intervention, occurs in about 1:2000 live births. In the international context, driven by an increasingly well-organized coalition of intersexed people, the potentially harmful effects of these medical interventions are being debated. Proponents of standard treatment protocols justify genital surgeries with an in-the-best-interest-of-the-child rationale, claiming that to leave a child's body in a state of sex ambiguity would inevitably lead to psychological harm and sexual maladjustment. Yet, no long-term follow up studies have been conducted to substantiate this claim. The delivery of current medical services is not structured in ways that allow for follow-up with intersexed adults, and much of the evidence from intersexed people themselves suggests that, in the long-term, the best interests of intersexed children are not protected. Many grow into adulthood feeling stigmatized and traumatized, and are left in both physiological and psychological pain by their years of medical treatment. Rodney Hunt is conducting a detailed qualitative study of parent-clinician communication to gain insight into the ways in which the current medical management of intersexed children is taken up or contested in a clinical setting. He aims to achieve a deeper understanding of the institutional and social factors that influence parent-clinician communication and decision-making when treatment options are discussed. Ultimately, Rodney’s goal is to advance current theoretical understandings of sex and gender in medicine and health policy frameworks, and to provide a valuable evidentiary base for diverse stakeholders, including clinicians, social scientists, health policy makers, intersex support groups, women’s health advocates, and those most directly affected, intersexed people and their families.