ISNA to Participate in Research on Quality of Life Issues, Hormone Disruptor Debate

Seattle - The Intersex Society of North America announced today that it would begin working in an advisory capacity with university researchers to develop a research plan for quality of life studies for people with intersex conditions.

Board Chair Thea Hillman stated, "This is an important step for us. For too long, scientists and doctors have studied intersex without the active and informed involvement of people with intersex. It's time for those with the greatest stake-people with intersex-to be able to help design research that meets our needs."

Intersex activists and health care professionals have long asserted the lack of useful data about people with intersex conditions, particularly in regard to treatment. The few studies that have been done have been mainly focused on "physical correctness" or gender identity as a measure of surgical success. Largely missing from this research have been questions about quality of life; sexual function and relationship issues; family dynamics, especially for children and young adults; and the kinds of psychosocial resources needed by people with intersex conditions.

In the same statement, ISNA also clarified its role in a project examining the relationship between hormone (or endocrine) disruptors and intersex conditions. Monica J. Casper, Ph.D., Executive Director, stated that the point of the organization's collaboration with Birth Defect Research for Children, Inc., was not to engage in original scientific research on the causes of intersex, but rather to conduct a literature review assessing what is being said and written in the scientific community and the media about the link between toxins and intersex conditions.

Casper stated that feedback from the intersex community has been very helpful in clarifying ISNA's role. She remarked, "In working with BDRC on this project, we want to be able to take an informed position on scientific developments that have major implications for people with intersex and their families. Currently, research on endocrine disruptors is proceeding with zero input from the intersex community. This project, shaped by our mission to end shame and secrecy and unwanted surgeries, hopes to remedy that."


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Monica J. Casper, Ph.D.
Executive Director

4500 9th Avenue NE, Suite 300
Seattle, WA 98105



The Intersex Society of North America (ISNA) is devoted to systemic change to end
shame, secrecy, and unwanted surgeries for children born with atypical sexual or reproductive anatomies. We are working to end the idea that intersexuality is
shameful or freakish. In the U.S. alone, five children are subjected to harmful,
medically unnecessary surgeries every day. We urge physicians to use a model
of care that is patient-centered, rather than concealment-centered.

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