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Measuring Sexual Orientation, Gender Identity, and Sex Characteristics in Survey Research

, by Emily S. Krueger, M.S. (Division of Cancer Control and Population Sciences, NCI), Cato M. Milder, Ph.D., M.S.P.H. (REB), and Sarah S. Jackson, Ph.D., M.P.H. (IIB)

The Pride flag, representing the LGBTQ+ community as a whole, its BIPOC members, the transgender community, and the intersex community

The Executive Order on Advancing Equality for Lesbian, Gay, Bisexual, Transgender, Queer, and Intersex Individuals elevates the call for better care and protection of sexual and gender minority (SGM) populations. This is an important step forward, as health research and the resulting guidelines have been historically informed by practices that ignored SGM identities or excluded SGM-identified populations altogether. To make healthcare more inclusive of SGM populations, several federal agencies and committees have since developed best practices for surveying these populations in affirming and inclusive ways to collect sexual orientation, gender identity, and sex characteristics (SOGI) data. SGM populations include individuals who are excluded by the binary constructs frequently recorded in health care guidelines or recommendations (e.g. male/female, man/woman) and include non-binary, genderqueer, and intersex individuals.

Based on evidence from the National Academies of Science, Engineering, and Medicine (NASEM), the NIH Sexual & Gender Minority Research Office (SGMRO) has put forward guiding principles for application in survey research. Briefly, this guidance is based on the following principles:

  1. Inclusive data collection means all respondents can see themselves and their identities represented. 
  2. Only necessary measures should be collected as directed by survey goals and scientific rationale. 
  3. Analysis and return of results should be performed at the most granular level possible while being cognizant of privacy concerns. 

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