Collaborative Statement Regarding the Treatment of Patients with Variations in Sex Characteristics
We, the undersigned, are health care providers who wish to express our support for the ethical and compassionate care of individuals born with atypical sex characteristics, sometimes referred to as Intersex or Differences/Disorders of Sex Development.
Though the number of individuals born with variations in their sex characteristics is rather large (1-2% of the general population), this group is often invisible to the medical community outside of specialized areas such as pediatric urology and pediatric endocrinology. Our signatures below indicate our shared desire for the health care profession as a whole, including these medical subspecialties, to provide care guided by evidence-based justifications rather than stigma.
Increasingly our profession has recognized that LGBTQ young people can live happy, healthy lives despite existing outside of normative conceptions of sexuality and gender. Our care for young people born with variations in their sex characteristics lags behind this principle of acceptance for those whose bodies transcend typical notions of male and female anatomy. The intersex community has vocally indicated over the past several decades its opposition to surgeries such as clitoral reductions and gonadectomies when performed in infancy. In some cases, those in the medical community have encouraged the families of intersex youth to proceed with these interventions in childhood in an attempt to “normalize” children’s bodies before they are able to participate in these life-altering decisions, let alone provide informed consent.
Many of the surgeries performed on this population occur when children are under the age of two. A recent study of several hundred thousand children published in Pediatric Anesthesia found that those exposed to general anesthesia before the age of four have poorer developmental outcomes, such as lower literacy scores, than children who were not exposed to anesthesia. The focus on surgery as a primary intervention has limited the investigation of psychosocial interventions for intersex patients, and allowing this to continue is a disservice to the field of medicine and to the patients we serve.
Intersex young people and their families are asking us, as health care providers, to listen to them when they tell us that they must be active participants in decisions around their treatment. They are asking us for the ability to guide the decision of whether to undergo irreversible, cosmetic interventions. This letter indicates our willingness to heed that request.