If LGBTQIA+ research is to be as inclusive as possible, how can we strive to include every body that may express the 30+ intersex variations among the estimated 6.8 million intersex people in the US alone? While significant improvements have been made in LGBTQIA+ data collection over the years, collecting data about intersex people is still very uncommon. This represents a major barrier to understanding the strengths and challenges experienced by intersex people and using that data to address inequities. This blog outlines four tips to promote greater inclusion of intersex people as part of RTI’s mission to improve the human condition.

1. Understand Current Definitions of Intersex

The LGBTQIA+ community is a diverse and vibrant community made up of people with a wide range of intersecting identities and experiences. The “I” in LGBTQIA+ stands for intersex: an umbrella term describing different variations for sex traits and/or reproductive anatomy (i.e., genitalia, hormones, internal anatomy, or chromosomes). 

Intersex can also be used as an identity term for someone with these variations. Some intersex people are born with these differences, while others develop these traits later in life. It is estimated that about 2% of the world is intersex, which is equivalent to the number of people who have red hair. 

Intersex is a gender identity for some people, but not for others. If someone is intersex their gender identity could be intersex, as well as any other gender identity (e.g., transgender woman, cisgender woman, non-binary, transgender man, cisgender man, etc.). 

2. Ask the Right Questions to Capture Intersex Data

Intersex people are often excluded from research, including research that collects data about other LGBTQIA+ identities. For example, no national surveys in the United States include questions about intersex people or variations in sex traits or reproductive anatomy. On the other hand, a lot of research related to intersex people has caused great harm by pathologizing variations in sex traits, not prioritizing autonomy, and contributing to stigma and marginalization.

RTI’s commitment to equity-centered research means that we learn about and adapt our data collection strategies over time as best practices evolve. A report commissioned by NIH discusses the importance of collecting data that accurately reflects intersex traits. Just like other demographic characteristics, intersex traits and/or identity impacts one’s life experiences and should not be overlooked.

Data about intersex people cannot be captured by asking about sex assigned at birth or gender identity, but rather requires a separate question during data collection. Collecting comprehensive sexual orientation, gender identity, and intersex data, as relevant, allows us to learn about the resiliencies and needs of the LGBTQIA+ community and use that information to advance equity.

3. Support Open Science

In January 2023, the White House Launched the Year of Open Science with the goal of making federally funded research findings more accessible to the public, and promoting innovation, trust, and equity. As intersex-inclusive research emerges, supporting Open Science is critical to disseminate findings and best practices for future intersex-inclusive efforts to both researchers and the public alike.

RTI embraces the Year of Open Science by encouraging staff to publish in open access channels, respecting diverse cultures and promoting racial justice and equity in our research, maintaining security and privacy, collaborating with clients on open science initiatives, and embracing reproducible research.

4. Use Resources for Intersex Research 

There are several useful resources that can provide additional guidance on including intersex people in research. LGBTQIA+ Rising, a working group within RTI’s Global Gender Center working to advance LGBTQIA+ research at RTI, developed an internal resource on inclusively engaging intersex people in research. By sharing the highlights of that guidance in this blog, we hope to support equitable LGBTQIA+ research. 

A 2023 documentary film, Every Body, highlights the history of intersex inclusion in medicine and tells the stories of three intersex activists. This film brings critical insights related to intersex inclusion to a wider audience. It also provides evidence-based, updated information from leaders at the National Institutes of Health Sexual & Gender Minority Research Office.

RTI researchers are constantly generating new insights on LGBTQIA+ equity for the research community and beyond. Visit the RTI Press publication “To whom it may affirm” for more on this growing area of study.

While these four tips are not an exhaustive list, putting them into practice will help ensure that intersex people are equitably included in research. As researchers committed to equity, we believe that better inclusion of the often-overlooked intersex population in research will aid in dismantling the systemic marginalization of intersex populations, provide autonomy to intersex research participants, and contribute to identifying solutions for inequities.

Disclaimer: This piece was written by Graham Booth (Public Health Analyst), Marcel Foster (Research Public Health Analyst), and Sunnie Hodge (Public Health Analyst) to share perspectives on a topic of interest. Expression of opinions within are those of the author or authors.