Open Letter to AIS-DSD Support Group

Dear Androgen Insensitivity Syndrome & Differences of Sex Development Support Group (AIS-DSD SG),

We would like to applaud the recent strong position you took in this joint statement with Interact, in which you co-announced that you would be in solidarity with the global intersex activist community by not participating in a study that had no initial input from intersex people--championing the South African disability rights movement’s slogan Nothing About Us, Without Us. You noted that the clinical researchers should have known better, for various reasons, including that both Phoenix Children’s Hospital and Cincinnati Children’s Hospital have “shown their strong support for our community by sponsoring AIS-DSD SG continuing medical education conferences [CME] and support group meetings.” You also rightfully pointed out, “we cannot allow ourselves to be bystanders in yet another study that neglects our priority for community based participatory research.” We couldn’t agree more.

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