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

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.

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.

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.

Types of research data participants want returned to them after participating in a research study.

Figure 4.

Changes in willingness to participate in research and trust toward researchers.