Center for Medical Ethics and Health Policy Staff Publications
Publication Date
1-1-2023
Journal
Journal of Law and the Biosciences
DOI
10.1093/jlb/lsad022
PMID
37456713
PMCID
PMC10347303
PubMedCentral® Posted Date
7-14-2023
PubMedCentral® Full Text Version
Post-print
Published Open-Access
yes
Keywords
cancer, data sharing, genomics, knowledge commons, policy Delphi, precision oncology
Abstract
Sharing cancer gene variant and relevant clinical data could accelerate progress in cancer genomics. However, data sharing is currently impeded by issues related to financial sustainability, equity, incentives, privacy and security, and data quality. Evidence-based policy options to facilitate data sharing in these domains, and ultimately improve interpretation of cancer-associated genomic variants, are therefore needed. We conducted a modified policy Delphi with expert stakeholders that involved generating, evaluating, and ranking potential policy options to address these issues, with a focus on the US context. We found policy options in the financial sustainability domain were highly ranked, particularly stable funding for trusted entities. However, some Delphi panelists noted that the culture of public research funding has favored short-term grants. Panelists favored policy options focused on action by funders, which had the highest overall total scores that combined effectiveness and feasibility ratings and priority ranking within domains. Panelists also endorsed some policy options connected to actors such as journals, but they were more skeptical of policy options connected to legislative actors and data resources. These findings are critical inputs for policy makers as they consider policies to enable sharing of cancer gene variant data to improve health.