WASHINGTON — The National Institutes of Health (NIH) should adopt new practices for collecting data on sex, gender, and sexual orientation — including collecting gender data by default, and not conflating gender with sex as a biological variable — says a new report from the National Academies of Sciences, Engineering, and Medicine. The report recommends standardized language to be used in survey questions that ask about a respondent’s sex, gender identity, and sexual orientation.

Measuring Sex, Gender Identity, and Sexual Orientation says better measurements will improve data quality, as well as the NIH’s ability to identify LGBTQI+ populations and understand the challenges they face. For example, the commonly used male/female binary measures of biological sex do not adequately represent the characteristics of all individuals, and survey questions that fail to provide adequate responses may result in inaccurate data. The report also points to a lack of consistency in language used in surveys and studies, complicating data analysis and reporting, and making it difficult to compare data across different programs and studies.

“While the recommendations in this report are specific to NIH, we believe they could be useful for any researcher or organization seeking to accurately understand and serve the LGBTQI+ community through better data collection,” said Nancy Bates, retired senior methodologist for survey research at the U.S. Census Bureau and co-chair of the committee that wrote the report.

“Everyone deserves to be counted and to have the opportunity to accurately describe their identities when asked,” said Marshall H. Chin, Richard Parrillo Family Professor of Healthcare Ethics at the University of Chicago and committee co-chair. “Making changes to the way these data are collected will not only enhance data quality but also improve the research experience for the same population we seek to count.”

Gender Data Collection
The report says the NIH standard should be to collect data on gender and to report it by default. Data collection should not conflate sex as a biological variable with gender — while sex describes anatomical and physiological traits, the concept of gender links gender identity, gender expression, and cultural expectations about social status, characteristics, and behavior that are associated with sex traits. In most contexts, collecting data on gender is more relevant than collecting data on sex as a biological variable.

Collecting data on sex as a biological variable should be limited only to circumstances where sex traits are relevant, and should be accompanied by gender data collection. This can be accomplished in most circumstances by using a “two step” pair of questions that ask about sex assigned at birth and gender identity, which can also be used to identify people with transgender experience. The report recommends standard language for the NIH to use for these questions.

Sexual Orientation
Sexual orientation can be defined by behavior, attraction, or identity — but identity is most often used in data collection settings and is most consistently tied with discrimination, the report says. It recommends standard language for questions assessing sexual orientation.

Intersex Traits
When the NIH seeks to identify people with intersex traits — sex traits that do not all correspond to a single sex — in research and surveys, it should use a stand-alone question, not add intersex as a third category to questions that ask about male or female sex. The report notes a lack of evidence for specific language or measurements to use, but points to three potential sample survey questions, and recommends NIH pursue further research to establish best practices.

Guiding Principles for Data Collection
The committee also developed five guiding principles for data collection on sex, gender, and sexual orientation:

• Inclusiveness — People deserve to be counted. Everyone should be able to see themselves and their identities represented in surveys and other data collection instruments.
• Precision — Use precise terminology that reflects the complex and multidimensional nature of sex, gender, and sexual orientation.
• Autonomy — Respect identity and autonomy. Data collection must allow respondents to self-identify whenever possible.
• Parsimony — Collect only necessary data, gathered in pursuit of a specific and well-defined goal.
• Privacy — Use data in a manner that benefits respondents and respects their privacy and confidentiality. Research findings should be shared with respondents to ensure the benefit, and data should be shared only under rigorous privacy and confidentiality standards.

Future Research
The report also recommends many areas for further research and development, including how these practices may work for youth respondents, proxy data collections, and possible alternative language to be used in surveys.  

The study — undertaken by the Committee on Measuring Sex, Gender Identity, and Sexual Orientation for the National Institutes of Health — was sponsored by the U.S. Department of Health and Human Services.

The National Academies of Sciences, Engineering, and Medicine are private, nonprofit institutions that provide independent, objective analysis and advice to the nation to solve complex problems and inform public policy decisions related to science, technology, and medicine. They operate under an 1863 congressional charter to the National Academy of Sciences, signed by President Lincoln.

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