
interACT Policy Statement on Participation in Research
Updated by interACT February 2, 2023
interACT: Advocates for Intersex Youth recognizes the value of high-quality, ethically conducted research as one avenue to improve the recognized disparities the intersex community faces in health-related outcomes and other areas of life.[1] Accordingly, interACT is committed to supporting research that measures what matters to people with innate variations in their sex characteristics (also known as intersex traits) and that meaningfully contributes to an understanding of their experiences and needs.
Historically as well as currently, the majority of the published medical research focusing on variations in sex characteristics has been conducted in ways that harm the community. Much of that research directly involves the performance of medically unnecessary surgeries on children with intersex traits[2] – a practice that interACT and other intersex-led organizations have advocated against domestically and internationally for nearly three decades. In addition to non-consensual surgery, children with variations in their sex characteristics have been subjected to invasive examinations, medical photography, and sexually abusive follow-up testing in the course of “data collection” for these studies.[3] Research that is carried out by medical practitioners who support and engage in these harmful acts is often designed to perpetuate and justify the paradigm of pre-emptive surgical intervention on children with variations in their sex characteristics.[4]Other harmful research has pathologized sexual orientation and gender diversity, seeking to suppress the expression of any non-cisgender, non-heterosexual identity or perceived gender nonconformity by intersex youth,[5] and some studies have even sought to prevent the development of intersex traits before birth altogether.[6]
At the same time, published research has largely neglected topics that are critical to intersex individuals’ well-being, such as the medical needs of intersex adults and intersex mental health in general, which have both been identified as areas requiring further investigation.[7] Furthermore, most studies published thus far have failed to meaningfully incorporate input from intersex individuals or from clinicians identified by intersex support or advocacy groups as allies.
Understanding the role that research has played – and continues to play – in the legacy of medicalized abuse against intersex individuals, it is interACT’s official policy that the organization will only support research efforts that adequately address the particular ethical concerns of the intersex community, especially in the context of research involving children and youth. At a minimum, studies must meet the highest standards of informed consent (and informed assent for children); respect the autonomy, dignity, and privacy of intersex participants and (where applicable) their families; avoid subjecting participants to unnecessary risks; and responsibly address questions relevant to the well-being of individuals with variations in their sex characteristics. Throughout the entire duration of a project, it is essential for researchers to be trauma-informed[8] and to demonstrate respect for individuals’ self-determination, including with regard to the preservation of one’s ability to lead their own medical decision-making.
Clinicians and researchers intending to undertake intersex-focused research are encouraged to involve interACT as early in the process as possible, well before approval is sought from institutional review boards (IRBs). From experience, interACT is most effective in supporting research when the organization is involved from a project’s inception, allowing the opportunity to provide input on the research design, its methods and goals, and sensitive and accurate use of language in any recruitment materials or survey instruments. A robust process of community-based participatory research (CBPR) is ideal,[9] in which intersex advocates and community members, affirming clinicians, and researchers collaborate on a study’s design and execution; where appropriate, co-authorship should be considered.