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

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.