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.