Julia S. Barthold
Societies for Pediatric Urology
August 29, 2017
Dear Dr. Barthold:
We write to share with you the first ever in-depth report on the treatment of intersex youth—or youth affected by differences of sex development (DSD)—in the United States. This report is the result of 10 months of intensive research, including extensive interviews with intersex people, parents of intersex children, and healthcare providers.
As you may know, Human Rights Watch is an international non-governmental research and advocacy organization that works in more than 90 countries and is headquartered in New York City. In the United States, interACT is the only organization dedicated exclusively to legal and policy advocacy on behalf of intersex youth.
In our report, we recommend that the Societies for Pediatric Urology issue guidance in line with the proposed American Medical Association Board of Trustees recommendation in report 7-I-16, “that medically unnecessary surgeries in individuals born with differences of sex development are unethical and should be avoided until the patient can actively participate in decision-making.”
Human Rights Watch and interACT are joined by other major health and human rights organizations, including the United Nations, the World Health Organization, and Amnesty International, condemning these surgeries when performed on an intersex person before they are old enough to consent. Every major intersex organization opposes unnecessary surgeries on intersex infants, as does every major legal organization specializing in LGBT issues in the United States.
In July 2017, three former US Surgeons General, including one who was a pediatric urologist, publicly opposed this practice because “there is insufficient evidence that growing up with atypical genitalia leads to psychosocial distress,” and “the surgery itself can cause severe and irreversible physical harm and emotional distress.” The AIS-DSD Support Group, the largest support group for affected individuals and their families in the US, endorsed the recommendations of our report when we launched it in Chicago on July 25, including its recommendations to the Societies for Pediatric Urology to strongly condemn nonconsensual surgeries on intersex infants.
Human Rights Watch, interACT, and the Societies for Pediatric Urology share the goals of protecting the human rights of and promoting healthy outcomes for individuals and families affected by DSD. We would be happy to meet to discuss our report’s findings and recommendations at your earliest convenience.
We note that your annual international meeting is taking place on September 8-10 in Montreal. We encourage you to consider that gathering as an opportunity to promote the well-being of young people affected by these conditions by declaring your organization’s intent to amend your official position to align with human rights standards and the best interests of intersex youth.
Kimberly Zieselman, Executive Director, interACT
Kyle Knight, Researcher, Human Rights Watch
Lorraine O'Grady, Executive Director; Chester J. Koh, Executive Council Member; Andrew E. MacNeily, Executive Council Member; Patrick H. McKenna, Executive Council Member; Paul A. Merguerian, Executive Council Member; J. Christopher Austin, Executive Council Member; Hillary L. Copp, Executive Council Member