DOI: 10.1161/circ.148.suppl_1.15671 ISSN: 0009-7322

Abstract 15671: Research Participants Are Hesitant About the NIH’s New Data Sharing Policy and Its Implications for Cardiac Research

Stephanie Nino de Rivera, Shalom Omollo, Annie Myers, Yihong Zhao, Ruth M Masterson Creber
  • Physiology (medical)
  • Cardiology and Cardiovascular Medicine

Objective: To evaluate participant preferences for the NIH’s Data Sharing (DMS) Policy and its implications for cardiac research. Introduction: The recent NIH DMS Policy went into effect in January 2023, yet it is unclear how the intended expansion to study data by the public will impact participant willingness to participate in research. Minoritized communities are already underrepresented in research and this could create distrust and increase hesitancy to participate in research. Giving participants options about future use of data, how it is stored and shared all requires further research.

Methods: A representative sample of adults in the US (n=610) were surveyed using an online platform (Prolific). Questions assessed participants’ agreeability with the new policy, change in willingness to participate in research, and preferences for consenting to future data sharing. Descriptive statistics and bivariate analyses were conducted using Pearson’s chi-squared test and Fisher’s exact test for categorical variables.

Results: Participants' mean age was 45 (19-93) years, 49.7% were female, 12.8% were Black/African American, 5.9% Asian, and 77.9% White, with the remainder identifying with another race (3.4%). Notably, fewer Black/African Americans (50%) agreed to the new NIH data sharing policy compared to White (67%), Asian (72%), and other races (86%). The results for additional questions relating to the new NIH policy and preferences for sharing clinical data are presented in Figure 1.

Conclusion: The new NIH DMS policy can increase hesitancy towards participating in research, especially in minoritized communities. Future work should focus on methods to increase representation in cardiac research by ensuring patient preferences for data sharing are upheld.

More from our Archive