Conserving Personhood: Meaning, Experience, and Regret in Intersex-affirming Healthcare

Recently, the first intersex-affirming policies from US hospitals sharpened public awareness of ongoing concerns in intersex healthcare. And yet, questions remain as to what it means to be intersex-affirming. What does conserving personhood mean with regard to intersex patients? When the patients are children, how should physicians navigate parents’ wishes about their bodies? And how should we interpret recent studies that explore parental regret about such permanent decisions?

Drawing from a range of disciplines, institutions, and career levels, our panel will explore how policymakers, physicians, parents, and activists consider intersex personhood. Using disability and queer frameworks, Panelist #1 will explore how the language we use to describe “intersex” obscures people’s lived experiences, thus contributing to a disconnect between intersex people’s identities, bodily experiences, and familial relationships. Panelist #2 will examine the parameters of the term "medically necessary" when physicians consider infant genital surgery. To what extent is the term dictated by assumptions about the patient's presumed future gender identity? Panelist #3 will consider the nature of regret: whose “regret” should be prioritized, the parents’ or the patients’? And what role should potential regret play in making surgical decisions? Panelist #4 will discuss the political and ethical implications of recent intersex cases where physicians surgically preserved anatomical options instead of enforcing a single gender identity, recognizing that the children might choose a different gender later. Collectively, we will explore whether we are headed in an ethical direction with intersex-affirming care.