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The Fundamental Importance of Sexual Orientation and Gender Identity Data

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Sexual and gender minority (SGM) communities have become increasingly visible in the US in recent decades thanks to the passionate and pioneering endeavors of many committed individuals, advocacy groups, and civil rights organizations. Along with this growth in visibility, there has been an increase in research focusing on health outcomes and other domains within these communities. We know now that SGM individuals encounter unique and significant health disparities and barriers to healthcare, and that more research and novel methods are needed to fully assess and resolve these issues. While it is true some researchers have made SGM health their primary field of inquiry and have helped to create an evidence base on the subject, many questions across numerous health conditions remain woefully unanswered. There is also a glaring lack of information on whether SGM people are adequately represented in the biomedical research workforce and accurately represented in the healthcare system.

We have an incredible opportunity to enhance our understanding of the unique needs of SGM people if we were to simply expand the collection of sexual orientation and gender identity (SOGI) data in research. Many projects of relevance to SGM health currently do not ask questions about SOGI status and other related demographic data, or do not perform analyses to discern SGM-specific results, when they should! We are missing significant chances to learn the most we can about SGM health and representation.

There have been various efforts to gather SOGI data on a national basis. Several nationally representative surveys conducted by federal agencies, such as the Centers for Disease Control and Prevention, the Department of Justice, and the US Census Bureau, currently inquire about SOGI status. The NIH has sought to improve SGM representation by encouraging clinical researchers to consider inclusion of SGM populations in relevant projects and by incorporating SOGI-related questions in several large studies, such as All of Us and the Adolescent Brain Cognitive Development (ABCD) Study. The NIH Clinical Center has also been collecting gender identity data on patients since January 2018.

Despite these strides, we still have much more work to do. Critical gaps in our understanding, assessment, and treatment of SGM health outcomes remain and prevent SGM populations from being attaining optimal health; SOGI data collection may help to fill in these gaps. For example, researchers may be able to deposit datasets encompassing SOGI information into online repositories or archives for reference or secondary analysis by other researchers. The PhenX Toolkit provides access to standardized protocols for those interested in collecting SOGI data.

Looking forward, we must continue to foster and advance inclusivity of SGM individuals in health research, healthcare, and the biomedical workforce, not only to eliminate existing disparities, but to ensure future equity of opportunity. We hope to see continued growth in SOGI data collection activities within the agency and beyond!

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