Barriers and facilitators to genomic data sharing: Ongoing tensions between federal expectations and researcher practice
Friday, October 13, 2023
8:00 AM – 9:15 AM ET
Location: Galena (Fourth Floor)
NIH recently updated its datasharing requirements with implications for billions of dollars in research. To explore ongoing barriers and facilitators to datasharing, as well as potential implications, we surveyed ~300 U.S. academic geneticists.
We found most were optimistic about the new requirements, including their ability to facilitate data access (86%) – including demographically diverse data (79%) – and validate research results (86%). Respondents also, however, reported barriers including the time required to organize, clean, and share data (78%) as well as the cost (67%) and limiting data use agreements (45%).
Private interests can also limit data sharing and usefulness. For example, over half of our sample who worked with private data stewards reported using federal funding for this research (54%), mostly for analysis (82%) or effort coverage (79%). But 40% also reported using federal funding for primary data collection. This is concerning considering that private data stewards often only allow sharing a limited dataset, but federal requirements mandate the sharing of all genetic data “generated” with funding. While this limit is understandable from the perspective of a private steward – genomic data are a business asset – the role of federal funding in building this asset remains under explored.
Our findings highlight continued tensions between NIH datasharing goals and requirements with actual practice, issues that are critical to address in the new policy moving forward. This talk will explore recommendations to help achieve the ambitious (and expensive) federal goal of datasharing and enabling scientific advances across diverse communities moving forward.
J. Denard Thomas – Center for Bioethics & Social Sciences in Medicine – University of Michigan Medical School; Amanda Greene – Center for Bioethics & Social Sciences in Medicine – University of Michigan Medical School; Kaitlyn Jaffe – Center for Bioethics & Social Sciences in Medicine – University of Michigan Medical School; J. Scott Roberts – Center for Bioethics & Social Sciences in Medicine – University of Michigan School of Public Health; Kerry Ryan – Center for Bioethics & Social Sciences in Medicine – University of Michigan Medical School