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

• DOI: 10.1161/circ.148.suppl_1.15671
• Publication Date: 2023-12-19T08:08:02Z
• Authors: Stephanie Nino de...; Shalom Omollo; Annie Myers; Yihong Zhao; Ruth M Masterson ...
• Keywords: Distrust; Data Sharing

Objective: To evaluate participant preferences for the NIH’s Data Sharing (DMS) Policy and its implications cardiac research. Introduction: The recent NIH DMS went into effect in January 2023, yet it is unclear how intended expansion to study data by public will impact willingness participate Minoritized communities are already underrepresented research this could create distrust increase hesitancy Giving participants options about future use of data, stored shared all requires further Methods: A representative sample adults US (n=610) were surveyed using an online platform (Prolific). Questions assessed participants’ agreeability with new policy, change research, consenting sharing. Descriptive statistics bivariate analyses conducted Pearson’s chi-squared test Fisher’s exact categorical variables. Results: Participants' mean age was 45 (19-93) years, 49.7% female, 12.8% Black/African American, 5.9% Asian, 77.9% White, remainder identifying another race (3.4%). Notably, fewer Americans (50%) agreed sharing policy compared White (67%), Asian (72%), other races (86%). results additional questions relating clinical presented Figure 1. Conclusion: can towards participating especially minoritized communities. Future work should focus on methods representation ensuring patient upheld.