Reporting practices for sexual and gender minority demographic information in NIH-supported genomic studies

ELSIcon2024 • Paper • June 12, 2024 

Authors:

Speaker: Zo Bly, BA (they/them/theirs) - National Human Genome Research Institute, National Institutes of Health

Clearly defined and consistently measured demographic categories are critical for accurate data collection, analysis, reporting, and ascertainment of trends. In 2022, the National Academies of Sciences, Engineering and Medicine (NASEM) released an NIH-commissioned consensus report outlining recommendations for researchers on how to collect demographic information related to sex, sexual orientation, and gender identity. This study examines how these variables were collected and reported in NIH-funded human genomic grant applications that focus on sexual and gender minority (SGM) populations and compares approaches to those used in a random sample of human genomic grant applications without an SGM focus. Grants focused on SGM populations were identified using the NIH Research, Condition, and Disease Categorization code for SGM.  

A significant proportion of grant applications in both samples did not specify whether sex or gender identity would be collected, and many used conflicting terms. Definitions of sex and gender variables were rarely provided, and most applications did not state how sex or gender variables would be collected. Applications rarely discussed sexual orientation except applications related to HIV/AIDS. Ambiguity and conflation of terms throughout grant applications led to a high proportion of projects in both samples where the corresponding NIH-required Inclusion Enrollment Reports (IER) were not reflective of the proposed study population. The binary structure of NIH IER tables for “sex/gender” complicates reporting of SGM populations and obscures SGM representation in research. Investigator use of NASEM recommendations may improve rigor in research and accuracy in reporting moving forward. 

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