New Report Offers Guidance for Standardizing Data on Sex, Gender, Sexual Orientation

March 15, 2022

On March 9, the National Academies of Sciences, Engineering, and Medicine (NASEM) issued a new report, Measuring Sex, Gender Identity, and Sexual Orientation, recommending the National Institutes of Health (NIH) implement new guidelines to standardize the collection of data on sex, gender, and sexual orientation. The report was developed by a NASEM task force convened by the NIH to improve the quality of data collection efforts and advance research and policy around the well-being of the lesbian, gay, bisexual, transgender, queer, and intersex (LGBTQI+) population.

Currently, there is a lack of consistency in language collected and used in clinical care and research, which makes it difficult to analyze and report data or compare data across different programs and studies. As the report notes, with better measurement, researchers will be better able to understand the challenges faced by people who are LGBTQI+.

The report establishes 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.

While the recommendations are designed specifically for the NIH, NASEM says they are meant to be useful for any researcher or organization seeking to accurately understand and serve the LGBTQI+ community.

The American Society of Clinical Oncology (ASCO) has a deep-rooted commitment to addressing health disparities among sexual and gender minority (SGM) populations and furthering equitable cancer care, and in 2017, released a position statement providing detailed recommendations on how to address the needs of SGM populations affected by cancer and members of the oncology workforce who identify as SGM. Most recently, ASCO recommended that sexual orientation and gender identity data collection and reporting be required in cancer research and institution-level efforts to examine and rectify implicit biases or discrimination toward patients, families, or healthcare workers, and to help address structural barriers to equitable care. ASCO research related to the collection of sexual orientation and gender identity data was also presented at the 2021 ASCO Annual Meeting.

ASCO also plans to work with stakeholders to distill these guidelines so that they can be implemented in an oncology setting.

Read the full report for additional recommendations, including suggested survey questions. A brief summary of the report is also available through NASEM.

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