From time to time, researchers contact us seeking our participation or endorsement. Please keep in mind:
InterConnect is a community of people living with unique variations of sexual characteristics, also known as intersex, that are also considered a sex minority, a population that faces many health disparities. Along with a history of trauma, the intersectionality of early medical intervention and the lack of consistent care in adulthood creates an imperative for research that addresses these issues and improves the health and well-being of our community.
Our ultimate goal is the promotion of research that addresses and improves the health and well-being of intersex individuals and their families, while also respecting the diversity of our population. To achieve this goal, we endorse a robust process of community-based participatory research (CBPR), focused on community-centered outcome measures (CCOM), in which intersex community members, clinicians and researchers collaborate in the design, execution, and publishing of research.
With that in mind, we encourage researchers to involve us early on in the research process, long before approval is sought from Institutional Review Boards (IRBs). We only participate in studies that meet the highest standards of informed consent (including assent for studies involving children), respect participants, and avoid unnecessary risk to them, while addressing questions relevant to our community.
All medical or healthcare-related research will be vetted and approved by the group’s medical advisory board (MAB), a group of medical allies who serve as consultants on research matters, and then approved by the InterConnect board.