ISNA Establishes Medical Advisory Board; Nation’s Top Experts to Provide Guidance and Support
The Intersex Society of North America is extremely pleased to announce the
creation of a new Medical Advisory Board whose members will offer support
and guidance in the pursuit of ISNA’s mission. The inaugural members,
who will serve a two-year term, include some of the nation’s leading
experts in pediatric endocrinology, urology, general pediatrics, nursing,
psychiatry, psychology, social work, and bioethics. Dr. Vernon Rosario, Chair
of the Medical Advisory Board and a member of ISNA’s Board of Directors,
stated that “the MAB will help guide ISNA's increasingly succesful
efforts to improve intersex treatment by promoting patient-centered care
and by supporting research on functional outcomes of various approaches to
treatment.” [Click here to see list of members.]
ISNA’s first decade has been remarkable for bringing a virtually invisible
issue forward and challenging a tradition of under-informed and often damaging
medical practice focused on creating the appearance of “normalcy.” Before
ISNA, decisions about management of intersex conditions tended to be shrouded
in secrecy and shame, and families faced with decision-making about intersex
on behalf of their newborns had no sources of information beyond traditional,
paternalistic medical practice and social prejudice. ISNA and courageous
people with intersex conditions have opened up debate where before there
was only silence, and have intelligently and compassionately developed
and advocated for a patient-centered model of care.
Over the past ten years, ISNA has moved from “outsider” to “insider” in
the medical community–our “reform paradigm” is now acknowledged
by an important minority of doctors, while even those doctors who disagree
with our program still work on a collegial basis with us. The Medical Advisory
Board is an indication of just how much progress ISNA has made over the
years in reshaping medical practices. Increasingly, we are working in partnership
with health care professionals to improve treatment practices for intersex.
Guided by basic ethical principles, ISNA works to shift the focus of doctors
toward the quality of life of their intersex patients as the measure
of their success, and to encourage doctors to base their treatment on principles
openness and respect that underlie other types of medical care. We advocate
for the following principles in understanding and treating intersex:
• Intersex is primarily a problem of shame and stigma, not of gender.
• The child is the patient, not the parents.
• Professional mental health care and peer support are essential.
• Honest, complete disclosure is good medicine, consistent with the principles
of contemporary medical ethics and law.
• All children should be assigned male or female, without surgery, based
on available evidence.
An individual’s sexual and reproductive integrity and autonomy
should be protected.
• A successful outcome is a person with a happy, fulfilling life.