ELSIcon2022 • Paper • June 3, 2022
Mary Majumder, Christi Guerrini, Amy McGuire, Jill Robinson, Matthew Blank, Robert Cook Deegan, Juli Bollinger, Janis Gear
It is now widely acknowledged that sharing genetic and other health-related data is critical to the advancement of science and can benefit individual and population health. While major investments have moved data sharing forward, there is a need for concrete, scalable policy solutions to persistent challenges. Our NCI-funded Sulston Project aims to address this gap, with a focus on sharing of cancer gene variant data. We are engaging stakeholders in a modified policy Delphi process to identify and prioritize challenges and generate and rank responsive policy options. Early rounds of the Delphi resulted in selection of five domains for further analysis: quality, privacy, sustainability, equity, and incentives. We conducted semi-structured interviews with 24 experts in these domains to inform later rounds of the Delphi. While there were areas of consensus, a number of interviewees offered distinctive and sometimes unorthodox perspectives. This presentation will describe several of these fresh takes across the five domains. They include a call to acknowledge that “all data have warts” and create standards that focus on characteristics versus “quality”; an admonition to pay close attention to human psychology and recognize that disclosures related to privacy and security can trigger distrust rather than trust; and a suggestion that data sharing promotion efforts should target junior researchers rather than all researchers and might even be wasted on senior researchers. We believe it is worth paying attention to these perspectives, which often reflected deep experience and thought, in order to inject some needed fresh air into data-sharing discussions.