Intersex Medical Policy and Research

interACT works with the medical community with the aim of eliminating the human rights violations experienced by individuals with intersex traits. interACT provides consultation and training for medical students, doctors, hospitals, researchers, Institutional Review Boards, and other health care providers on how best to improve care and increase positive health outcomes for this population.

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Intersex Research

Official interACT Policy on Participation in Research

Adopted by interACT, September 29, 2016

interACT is eager to collaborate with researchers who are interested in conducting research into issues that matter to our community–people born with variations of sex anatomy, also known as intersex traits–and their families.

We have found that we are most effective in supporting the development of research that meets our community’s needs when involved from the inception of research in the design of methods and goals, when able to give input into sensitive language, and when engaged to ensure that the special concerns of the intersex community regarding human research ethics are addressed.(1) Our ultimate goal is a robust process of community-based participatory research (CBPR), in which patient advocates, clinicians and researchers collaborate in the design of research.(2) With that in mind, we encourage clinicians and researchers to involve us early when undertaking projects, well before approval is sought from institutional review boards (IRBs).

We look forward to collaborating with researchers on the development of high-quality projects that meet the following criteria:

  • We only participate in studies that meet the highest standards of informed consent (including assent for studies involving children), respect the participants and avoid unnecessary risk to them, and address questions relevant to our community.
  • We only participate in studies in which there is an officially recognized medical consultant from our community. This qualified individual would typically be involved from the project’s inception, and will provide input into the goals and design of the study in order to direct researchers toward outcomes that will further understanding of patient-centered care for intersex.

For further information, please contact the Chairperson of our Medical Research and Policy Committee, Arlene Baratz MD at info@interactadvocates.org.

  1. Lee PA, Nordenstrom A, Houk CP, Ahmed SF, Auchus R, Baratz A, et al. Global Disorders of Sex Development Update since 2006: Perceptions, Approach and Care. Hormone research in paediatrics. 2016. doi: 10.1159/000442975. PubMed PMID: 26820577.
  2. Israel BA, Schulz AJ, Parker EA, Becker AB, Community-Campus Partnerships for H. Community-based participatory research: policy recommendations for promoting a partnership approach in health research. Educ Health (Abingdon). 2001;14(2):182-97. doi:
10.1080/13576280110051055. PubMed PMID: 14742017.

The InterConnect Support Group participates only in studies in which there is an officially recognized community medical consultant from our group. This qualified individual would be involved from the project’s inception and will provide input into the goals and design of the study in order to direct researchers towards outcomes that will further understand patient-centered care for DSD. Learn more.

In 2010, the National Institutes of Health (NIH) commissioned the Institute of Medicine to assess the current state of knowledge about the health of lesbian, gay, bisexual, and transgender (LGBT) people and to identify research gaps and formulate a research agenda that could guide NIH in enhancing and focusing research in this area. The resulting report, The Health of Lesbian, Gay, Bisexual, and Transgender (LGBT) People: Building a Foundation for Better Understanding, was published in 2011. Following the release of the report, NIH initiated several activities to evaluate and advance research on Sexual and Gender Minority populations. This included various forms of outreach to solicit feedback, support of extramural researchers, an analysis of the SGM portfolio to identify areas of opportunity, and the development of a strategic plan for SGM research.

The NIH 2016-2020 Strategic Plan to Advance Research on the Health and Well-being of Sexual and Gender Minorities has now been finalized. interACT (at the time Advocates for Informed Choice) submitted our official response about the proposed goals and objectives outlined in this SGM Strategic Plan.

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Research & Policy Statements Supporting Intersex Bodily Autonomy & Improved Care

HRW & interACT Report:
I Want to Be Like Nature Made Me: Medically Unnecessary Surgeries on Intersex Children in the US

interACT collaborated on a joint report with Human Rights Watch: “‘I Want to Be Like Nature Made Me’: Medically Unnecessary Surgeries on Intersex Children in the US.”

This report was the result of months of in-depth research and interviews with intersex individuals, parents of intersex children, and doctors to uncover the truth about intersex medical care in the United States: the practices and their consequences; what has changed over the decades of international activism; and what still remains to be done.

LEARN MORE ABOUT THE REPORT