This weekend when urologists from around the world gather in San Francisco for the American Urological Association’s (AUA) annual conference, dozens of patient advocates will participate – yet a key group of people will be missing.
The intersex community – the nearly 1.7 percent of people born with bodies that fall outside society’s definitions of typical “male” and “female” – will be absent. Their repeated requests to engage with the AUA have been met with bluster and denial.
interACT: Advocates for Intersex Youth wants one thing from the AUA: evidence- and ethics-based standards of care. This means ending medically unnecessary “normalizing” surgeries on intersex children who cannot give informed consent.
Based on a theory popularized in the 1960s, some doctors continue to operate on intersex children claiming to make it easier for them to grow up “normal.” But as research shows, the results are often catastrophic, and can lead to sterilization, incontinence, and post traumatic stress disorder. Also, the supposed benefits are largely unproven. Most of these babies are born perfectly healthy – meaning immediate, irreversible intervention is rarely warranted.
Still, urology professional associations defend the status quo by distorting evidence and falsely claiming patient advocates want a “universal ban” on all surgeries. They are ignoring not only these patients but also the increasing number of medical, legal, and human rights organizations that support them.
Medically unnecessary surgery on intersex children has been condemned by the World Health Organization, three former US surgeons-general, and Physicians for Human Rights. United Nations experts and pediatrics bodies are against it. A draft report on deferral of medically unnecessary surgeries on intersex children is under consideration in the American Medical Association House of Delegates.
AUA’s code of ethics says that member surgeons “will consider informed consent integral to providing appropriate medical or surgical care” and that patients “must be provided with all of the information necessary to consent and to make his own choice of treatment, regardless of [the doctor’s] own advice or judgment.” The Society for Pediatric Urology (SPU) in 2017 stated: “We believe that patient advocacy groups will best serve their constituents by encouraging them to work with us to advance the care of all children.”
Unfortunately, AUA and SPU have generally failed to engage in genuine dialogue with intersex activists about how to live up to these principles. So advocates are speaking out against the situation on social media, asking: Will the AUA show up #4intersex?