"I'm Always a Little Bit Skeptical": Intersex Young Adults' Recommendations for Community-partnered Health Research

An estimated 1.7% to 4% of people in the United States are born intersex, or with congenital variations that transcend binary sex. Historically, Western medical protocols have advocated for the 'correction' of intersex variations through early surgical intervention, a practice opposed by the majority of intersex-led organizations. Stakeholder voices remain under-represented in research.

This study aimed to explore the experiences of intersex young adults participating in health research, with the goal of gathering recommendations to improve intersex-affirming research practices.

In collaboration with interACT: Advocates for Intersex Youth, a leading intersex rights organization, we conducted four focus groups between January and May 2022 with 11 intersex young adults. Participants were recruited via convenience sampling through interACT's mail listservs and purposively sampled for diversity in age, geographic location, race and ethnicity, and gender identity. Thematic analysis was used to analyze focus group transcripts.

Three central subthemes emerged regarding participants' problems with intersex health research: dehumanization and objectification, stigmatizing language, and under-representation in research. Four subthemes emerged in terms of recommendations for intersex-affirming research: using community-based research approaches; focusing on strengths rather than pathology; conducting translational research that improves health care services; and prioritizing respondent experiences in study design.

This study emphasizes the negative experiences of intersex individuals with non-affirming research practices and underscores the need for more ethical, participatory, and humanizing research approaches. By centering intersex stakeholders, future research can better support the autonomy, wellbeing, and health equity of intersex communities.