Key Dates

Related Announcements

• August 28, 2019 - Sexual and Gender Minority Populations in NIH-Supported Research. See Notice NOT-OD-19-139.

Issued by

Sexual and Gender Minority Research Office (SGMRO)

Purpose

This notice announces a revision to the definition of sexual and gender minority (SGM) populations for NIH-supported research.

Implementation Timeline

This Notice is effective upon its release date.

Background

SGM-Specific Health Disparities and Structural Barriers

Statistics indicate that as of 2024, nearly eight percent of the U.S. population identifies as LGBT, with much of this growth attributed to increases in LGBT identification among younger generations. In recent years, policies and laws have been enacted in support of LGBTQI+ communities and their well-being. For example, the 21st Century Cures Act included provisions for the NIH Director to encourage efforts to improve research related to the health of sexual and gender minority (SGM) populations, including to increase participation of SGM populations in NIH-supported clinical research and to facilitate the development of methods for conducting SGM research. SGM people were designated as a population with health disparities for NIH research in 2016 by the Director of the National Institute on Minority Health and Health Disparities in consultation with the Director of the Agency for Healthcare Research and Quality. The NIH SGM health research portfolio has steadily grown and diversified since 2015.

However, members of SGM communities still face unique and significant disparities and barriers across domains such as physical, mental, and behavioral health; social and structural determinants of health; and healthcare access and quality. This includes higher SGM group-specific rates of and risks for some chronic health conditions (e.g., arthritis, asthma, cardiovascular disease, diabetes, certain forms of cancer, and HIV/AIDS), depression, anxiety, eating disorders, substance use, smoking, stigma, discrimination, bullying, using preventive health services less frequently, and negative experiences in healthcare settings.

Health disparities and structural barriers may be uniquely magnified for SGM individuals who are also in other marginalized social categories, such as racial and/or ethnic minoritized populations, people who are socioeconomically disadvantaged, people with disabilities (e.g., physical, hearing, and intellectual), older adults, people experiencing or who have experienced incarceration, veterans, people experiencing houselessness or housing instability, people with limited English language proficiency, people living in underserved geographical areas, and people living with HIV. SGM people may experience SGM-specific disparities and structural barriers in addition to those stemming from other facets of their identity and related systems of oppression. Intersectional factors can have complex synergistic effects on health and are important to consider for more holistically understanding and addressing SGM health and well-being.

The Sexual & Gender Minority Research Office and the NIH SGM Research Strategic Plan

The Sexual & Gender Minority Research Office (SGMRO) was founded in 2015 within the NIH Office of the Director’s Division of Program Coordination, Planning, and Strategic Initiatives. The office advances SGM health research by developing and coordinating health- and research-related activities at the NIH in collaboration with the agency’s institutes, centers, and offices. One of the office’s primary charges is to lead the implementation of the NIH-wide SGM Research Strategic Plan, the most recent of which is the NIH Strategic Plan to Advance Research on the Health and Well-being of Sexual and Gender Minorities FYs 2021-2025. This plan outlines key overarching considerations, scientific themes, and research opportunities. It also defines operational goals in the field for the entire agency across four areas:

• Goal 1: Advance rigorous research on the health of SGM populations in both the extramural and intramural research communities
• Goal 2: Expand SGM health research by fostering partnerships and collaborations with a strategic array of internal and external stakeholders
• Goal 3: Foster a highly skilled and diverse workforce in SGM health research
• Goal 4: Encourage data collection related to SGM populations in research and the health research workforce

Revised Definition

“Variations in sex characteristics” (VSC) is a term more commonly used by people with intersex traits and/or who identify as intersex. This has supplanted the term “differences of sex development” (DSD) which is a term coined by and primarily used by health professionals in a medical context. Health researchers and community advocates support the use of VSC instead of DSD. Thus, to better reflect current lesbian, gay, bisexual, transgender, queer, intersex, and other SGM (LGBTQI+)-related terminology, the NIH definition of SGM populations for research is revised with this notice to read as follows:

Sexual and gender minority (SGM) populations include, but are not limited to, individuals who identify as lesbian, gay, bisexual, asexual, transgender, non-binary, Two-Spirit, queer, and/or intersex. Individuals with same-sex or same-gender attractions or behaviors and those with a variation in sex characteristics are also included. These populations may also encompass those who do not self-identify with one of these terms but whose sexual orientation, gender identity or expression, or biological traits are characterized by non-binary constructs of sexual orientation, gender, and/or sex.

NIH wants to make clear that this change in definition is intended to enhance inclusivity and does not exclude any person or population included under previous definitions of SGM populations for NIH.  

Inquiries

Please direct all inquiries to:

Sexual & Gender Minority Research Office (SGMRO)
Email: SGMRO@nih.gov