Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2025 May 2;8(3):ooaf031.
doi: 10.1093/jamiaopen/ooaf031. eCollection 2025 Jun.

Integrating public preferences to overcome racial disparities in research: findings from a US survey on enhancing trust in research data-sharing practices

Stephanie Niño de Rivera  1 , Yihong Zhao  1 , Shalom Omollo  1 , Sarah Eslami  1 , Natalie Benda  1 , Yashika Sharma  1 , Meghan Reading Turchioe  1 , Marianne Sharko  2 , Lydia S Dugdale  3 , Ruth Masterson Creber  1
Affiliations

Integrating public preferences to overcome racial disparities in research: findings from a US survey on enhancing trust in research data-sharing practices

Stephanie Niño de Rivera et al. JAMIA Open. .

Abstract

Objectives: Data-sharing policies are rapidly evolving toward increased data sharing. However, participants' perspectives are not well understood and could have an adverse impact on participation in research. We evaluated participants' preferences for sharing specific types of data with specific groups, and strategies to enhance trust in data-sharing practices.

Materials and methods: In March 2023, we conducted a nationally representative online survey with 610 US adults and used logistic regression models to assess sociodemographic differences in their willingness to share different types of data.

Results: Our findings highlight notable racial disparities in willingness to share research data with external entities, especially health policy and public health organizations. Black participants were significantly less likely to share most health data with public health organizations, including mental health (odds ratio [OR]: 0.543, 95% CI, 0.323-0.895) and sexual health/fertility information (OR: 0.404, 95% CI, 0.228-0.691), compared to White participants. Moreover, 63% of participants expressed that their trust in researchers would improve if given control over the data recipients.

Discussion: Participants exhibit reluctance to share specific types of personal research data, emphasizing strong preferences regarding external data access. This highlights the need for a critical reassessment of current data-sharing policies to align with participant concerns.

Conclusion: It is imperative for data-sharing policies to integrate diverse patient viewpoints to mitigate risk of distrust and a potential unintended consequence of lower participation among racial and ethnic minority participants in research.

Keywords: data sharing; patient participation; personal autonomy; transparency; trust.

PubMed Disclaimer

Conflict of interest statement

Our team has the following competing interests to disclose: MRT Boston Scientific (consulting), Iris OB Health (equity). The remaining authors have no conflicts of interest to disclose. This does not alter our adherence to JAMIA policies on sharing data and materials.

Figures

Figure 1.
Figure 1.
Bar charts showing Sharing preferences for sharing specific types of data (sexual health and fertility, clinical symptom, imaging, and genetic data) with external recipients by different racial groups.
Figure 2.
Figure 2.
Odds ratios (95% confidence intervals) of participants’ willingness to share different types of research data with health-technology companies and public health organizations. The “Another Race” category comprises individuals identifying as Asian, Multirace, Native American or Alaska Native, Native Hawaiian or Pacific Islander, or a race not listed.
Figure 3.
Figure 3.
Types of research data participants want returned to them after participating in a research study.
Figure 4.
Figure 4.
Changes in willingness to participate in research and trust toward researchers.
See this image and copyright information in PMC

Similar articles

See all similar articles

References

    1. NOT-OD-21-013: final NIH policy for data management and sharing. Accessed January 17, 2024. https://grants.nih.gov/grants/guide/notice-files/NOT-OD-21-013.html
    1. Steinsbekk KS, Kåre Myskja B, Solberg B. Broad consent versus dynamic consent in biobank research: is passive participation an ethical problem? Eur J Hum Genet. 2013;21:897-902. - PMC - PubMed
    1. Mangal S, Park L, Reading Turchioe M, et al. Building trust in research through information and intent transparency with health information: representative cross-sectional survey of 502 US adults. J Am Med Inform Assoc. 2022;29:1535-1545. - PMC - PubMed
    1. Lemke AA, Wolf WA, Hebert-Beirne J, et al. Public and biobank participant attitudes toward genetic research participation and data sharing. Public Health Genomics. 2010;13:368-377. 10.1159/000276767 - DOI - PMC - PubMed
    1. Haga SB, O’Daniel J. Public perspectives regarding data-sharing practices in genomics research. Public Health Genomics. 2011;14:319-324. 10.1159/000324705 - DOI - PMC - PubMed

LinkOut - more resources