The following is a press release from The Pride Study dated April 16, 2024:

Official Title

Our needs have been ignored for a long time: Factors affecting willingness of Black and Hispanic/Latinx sexual and gender minority communities to donate biospecimens

Community Title

Willingness of Black and Hispanic/Latinx LGBTQIA+ communities to donate biological samples

What Did We Do?

We interviewed 22 LGBTQIA+ participants from The PRIDE Study who identified as Black and/or Hispanic/Latinx to understand what would influence their decision to donate biological samples (i.e., biospecimens, such as blood, hair, saliva, and urine) for substance use research. We did this because Black and Hispanic/Latinx LGBTQIA+ people are underrepresented in substance use research.

What Was New, Innovative, or Notable?

This was one of the first studies to explore what affects willingness to donate biological samples among Black and Hispanic/Latinx LGBTQIA+ communities. This is important because these communities have often been excluded from or mistreated in substance use research.

What Did We Learn?

We identified 8 themes around what influences Black and Hispanic/Latinx LGBTQIA+ participants’ willingness to donate biological samples for substance use research: 1) community benefits; 2) personal benefits; 3) feeling that the community is being taken advantage of; 4) personal risks; 5) convenience; 6) trustworthiness of the research team; 7) perceived value in donating; and 8) biological sample collection being seen as more normal because of the COVID-19 pandemic.

Participants were highly motivated to donate their biological samples to increase knowledge about the needs and improve the health of their communities. Most participants expressed concern about data security, privacy, and misuse. Many participants referenced past unfair and poor treatment that people from their communities have faced in health care and research.

What Does This Mean for Our Communities?

Black and Hispanic/Latinx LGBTQIA+ people are motivated to donate their biological samples if researchers use ethical practices and explain the purpose of the study. Examples include protecting participant data and clearly communicating the steps involved in biological sample donation. Researchers can use the findings from this study to increase representation from Black and Hispanic/Latinx LGBTQIA+ people and to reduce substance use among these communities.

What’s Next?

Researchers can apply the suggestions shared in the paper. For instance, researchers can build trust with Black and Hispanic/Latinx LGBTQIA+ communities and provide education about biological sample donation during the consent process. Future research should explore if following these participant recommendations leads to actual changes in biological sample donation.

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

Ceja, A., Bruno, V., Panyanouvong, N. L., Aguilar, J., Raygani, S., Lubensky, M. E., Dastur, Z., Lunn, M. R., Obedin-Maliver, J., & Flentje, A. Our needs have been ignored for a long time: Factors affecting willingness of Black and Hispanic/Latinx sexual and gender minority communities to donate biospecimens. Annals of LGBTQ Public and Population Health. 2024 March 22. doi: https://doi.org/10.1891/LGBTQ-2023-0022.

View the full paper at: https://escholarship.org/uc/item/32d9g3wc.