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Intersex Society of North America (ISNA) announced today that it will be working with "university researchers to develop a research plan for quality of life studies" for people with intersex conditions. "For too long, scientists and doctors have studied intersex without the active and informed involvement of people with intersex," says Thea Hillman, the board chair of ISNA. "It's time for those with the greatest stake--people with intersex--to be able to help design research that meets our needs."
Also in the same press release, ISNA clarified its role in the research collaboration with Birth Defect Research for Children, which was announced earlier. According to ISNA, the organization is not planning 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" about the environmental links to intersex conditions. Monica Casper, the executive director of ISNA, says that "feedback from the intersex community has been very helpful in clarifying ISNA's role."
Posted by Emi on Sep 30, 2003