what is intersex?

An estimated one in 2,000 babies is born with a reproductive or sexual anatomy that doesn't seem to fit typical definitions of male or female. The conditions that cause such variations are sometimes grouped under the terms "intersex" or Disorders of Sex Development. Since the 1950s, infants and children with intersex conditions have routinely been subjected to multiple surgeries and other medical interventions intended to "normalize" their appearance. Their families have been instructed to keep their conditions a secret, sometimes even from the child. Many children with intersex conditions have also been subjected to repeated medical displays unrelated to their health care needs.

Few follow-up studies have been done, and there is little evidence that this treatment benefits the children involved. In the last decade, however, many intersex adults have stepped forward to say that the medical treatment they received was harmful, leading to sterility, ongoing pain, loss of genital sensation and sexual function, scarring, incontinence, feelings of shame, and depression. Leaders of the adult intersex community are calling for an end to unnecessary surgeries and medical display, and for children with intersex conditions to have a voice in their own treatment.

why is this a legal issue?

Many doctors and mental health experts agree that current models of treatment are causing harm. Legal scholars and ethicists have questioned the way decisions are made on behalf of children with intersex conditions. Parents of children born with intersex conditions can feel pressured to make quick decisions, often with inadequate information about the risks of surgery and the uncertainty of outcomes. A recent publication of the National Institutes of Health states that due to the lack of evidence supporting existing practices "there is currently a crisis in clinical management of children with disorders of sexual differentiation." Nonetheless, cosmetic genital surgery on infants with intersex conditions is still the predominant practice in the U.S.

In this climate of uncertainty, stigma and fear, caregivers may be making decisions that -- however well-intentioned -- violate the rights of intersex people. With so much at stake for the individuals and families involved, it is critical to consider not only medical outcomes, but also the civil and human rights of children born with intersex conditions. IICL is committed to advancing this discussion with a sense of respect and compassion for the children, parents, doctors and intersex adults involved.

sources

The Intersex Society of North America (ISNA)

National Institutes of Health, Strategic Plan for Pediatric Urology: NIDDK Research Progress Report, NIH Publication No. 06-5879 (Feb. 2006).

Alice Domurat Dreger, Intersex in the Age of Ethics (1999).

San Francisco Human Rights Commission, Report: A Human Rights Investigation into the "Normalization" of Intersex People (April 2005).