The following is a press release issued by The Pride Study on Monday, November 13, 2023:

Official Title

Asking sexual orientation and gender identity on health surveys: Findings from cognitive interviews in the United States across sexual orientations and genders

Community Title

How people prefer to be asked about their sexual orientation and gender identity on health surveys

What Did We Do?

We interviewed 44 diverse participants about how they prefer to be asked about sexual orientation and gender identity on health surveys. Participants included 14 cisgender heterosexual people and 30 LGBTQIA+ people and ranged in age from 18-82. Also, 64% of participants indicated that their race or ethnicity was either: Asian; Black, African American, or African; Hispanic, Latino, or Spanish; or had two or more races/ethnicities. Interviews were 60 to 90 minutes and included giving feedback on various versions of survey questions.

Note: Participants for this study were not recruited from The PRIDE Study. However, this study was the first part of a series that later included participants from The PRIDE Study and was inspired by The PRIDE Study participants.

What Was New, Innovative, or Notable? 

This was one of the first studies that explored how both cisgender heterosexual people and LGBTQIA+ people want to be asked about sexual orientation and gender identity on health surveys and how these groups compare. We had a diverse group of participants by age, sexual orientation and gender identity, race and ethnicity, and from rural, urban, and suburban settings across the U.S.

What Did We Learn?

We identified four major themes that are important to consider when asking about sexual orientation and gender identity: 1) purpose for asking, 2) context of information collection, 3) distrust of the government, and 4) fear. While many participants were open to sharing sexual orientation and gender identity information on a federal health survey, all participants questioned the survey’s purpose and expressed distrust of the government. However, only LGBTQIA+ participants said they might change their answers depending on the survey context. Many said they would be more willing to share this information in a personal medical context or for a local community survey rather than a federal health survey. Further, only LGBTQIA+ participants expressed fear for their safety when sharing this information.

What Does This Mean for Our Communities? 

When taking a federal health survey, some LGBTQIA+ people may have different reasons for being fearful compared to cisgender heterosexual people. Additionally, there may be common concerns across LGBTQIA+ and cisgender heterosexual people about sharing sexual orientation and gender identity information on health surveys. Therefore, taking a ‘one-size-fits-all’ approach to asking about sexual orientation and gender identity on health surveys may not be ideal.

What’s Next? 

Additional research is needed to further explore how LGBTQIA+ people feel about sharing sexual orientation and gender identity information on surveys. Research should look at the reasons why people may change their answers in different survey contexts or not answer these questions at all.

Action Steps

See http://www.pridestudy.org/study for more information and to share this study with your friends and family.

If you are interested in conducting research related to LGBTQIA+ health, please learn more about collaborating with The PRIDE Study at http://pridestudy.org/collaborate.

Citation

Pho A.T., Bates N., Snow A., Zhang A., Logan R., Dastur Z., Lubensky M.E., Flentje A., Lunn M.R. & Obedin-Maliver J. Asking sexual orientation and gender identity on health surveys: Findings from cognitive interviews in the United States across sexual orientations and genders. SSM – Qualitative Research in Health. 2023 September 29; doi: https://doi.org/10.1016/j.ssmqr.2023.100344.

Photo used courtesy of Gender Spectrum