Notice Number: NOT-OD-19-139

Key Dates
Release Date: August 28, 2019

• September 6, 2024 - Updating the Definition of Sexual and Gender Minority Populations in NIH-Supported Research. See Notice NOT-OD-24-169.

Issued by
Sexual and Gender Minority Research Office (SGMRO)

Purpose

The purpose of this Notice is to announce the revision of the definition of sexual and gender minority (SGM) populations for research purposes at the NIH, as well as to provide a summary of information about SGM health research at the NIH. It is expected that this Notice will help to enhance the representation of SGM individuals in the agency’s research portfolio and to stimulate the development of novel research projects and strategies to better understand and advance SGM health.

Implementation Timeline

This Notice is effective upon its release date.

The Sexual & Gender Minority Research Office

The NIH Fiscal Years 2016-2020 Strategic Plan to Advance Research on the Health and Well-Being of Sexual and Gender Minorities was released in 2015. The plan elucidated goals and objectives to encourage the advancement of basic, clinical, behavioral, population, and social sciences research to improve the health of SGM individuals. One of the objectives of the strategic plan was to establish a central office to coordinate SGM-related research and activities at the NIH. Established in 2015, the Sexual & Gender Minority Research Office (SGMRO) resides within the Division of Program Coordination, Planning, and Strategic Initiatives (DPCPSI) in the NIH Office of the Director.

The NIH laid out four overarching goals in its FY 2016-2020 SGM strategic plan: (1) Expand the knowledge base of SGM health and well-being through NIH-supported research; (2) Remove barriers to planning, conducting, and reporting NIH-supported research about SGM health and well-being; (3) Strengthen the community of researchers and scholars who conduct research relevant to SGM health and well-being; and (4) Evaluate progress on advancing SGM research. The SGMRO pursues these goals by convening and participating in events involving SGM health priorities, managing dissemination of information about SGM health research, and working with NIH Institutes, Centers, and Offices (ICOs) to leverage resources and develop initiatives to promote SGM health and research.

Definition of Sexual and Gender Minorities

At the NIH, the term sexual and gender minority originally encompassed individuals who identify as lesbian, gay, bisexual, transgender, queer, or intersex, as well as those who do not self-identify with one of these terms, but whose sexual orientation, gender identity, or reproductive development varies from traditional, societal, cultural, or physiological norms. The NIH has heretofore opted to use this definition to maintain inclusivity and consistency in reporting. However, after consultation with several NIH groups that possess contemporary expertise in SGM health and research, the NIH is releasing an updated SGM definition to foster and expand inclusion of SGM individuals in health research by better clarifying the populations who fall under the SGM umbrella. The definition of SGM is revised to read as follows:

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

The SGMRO would like to make clear that this change in definition is not intended to exclude any person or population previously included under the former definition of SGM populations.

SGM as a Health Disparity Population

SGM individuals face unique health challenges, and a continually growing body of evidence suggests that SGM individuals suffer disproportionately from a variety of conditions and diseases. In October 2016, the National Institute on Minority Health and Health Disparities (NIMHD), in collaboration with the Agency for Healthcare Research and Quality (AHRQ), announced that SGM populations had been officially designated as a health disparity population for NIH and AHRQ research. This designation has since facilitated the creation of tailored research projects, programs, and activities intended to tackle the distinct issues encountered by SGM individuals. In addition, ascertainment of SGM status in ongoing and planned population studies has been enhanced. However, SGM-specific health disparities persist today, and novel methods to measure, address, and prevent them are still needed.

Addressing SGM-Specific Health Disparities

To help eliminate these disparities, the 21st Century Cures Act, which authorized funding to accelerate research in several key public health areas at the NIH, included provisions specifically intended to increase participation of SGM populations in NIH-supported clinical research and to facilitate the development of methods for conducting SGM research. In support of this, the NIH SGM Research Working Group (SGM RWG), a working group of the NIH Council of Councils, recommended in its 2019 Mid-Course Strategic Plan Review that the NIH encourage applicants for clinical research funding to demonstrate consideration of inclusion of SGM populations whenever appropriate. Increased data collection and analyses on SGM populations may help to illuminate important information needed to address the health of these communities.

Inquiries

Please direct all inquiries to:

Karen L Parker, PhD, MSW
Division of Program Coordination, Planning, and Strategic Initiatives
Sexual & Gender Minority Research Office
Telephone: 301-451-2055?
Email: [email protected]