Policy options to facilitate cancer genomic variant data sharing: outcomes of a modified policy Delphi.

Autor:	Robinson JO; Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX, 77030, USA., Daoud A; Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX, 77030, USA., Geary J; Consortium for Science, Policy & Outcomes, Arizona State University, Washington, DC, 20006, USA., Rahimzadeh V; Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX, 77030, USA., Bollinger J; Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX, 77030, USA.; Berman Institute of Bioethics, Johns Hopkins University, Baltimore, MD, 21205, USA., Guerrini CJ; Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX, 77030, USA., Cook-Deegan R; Consortium for Science, Policy & Outcomes, Arizona State University, Washington, DC, 20006, USA., McGuire AL; Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX, 77030, USA., Majumder MA; Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX, 77030, USA.
Jazyk:	angličtina
Zdroj:	Journal of law and the biosciences [J Law Biosci] 2023 Jul 14; Vol. 10 (2), pp. lsad022. Date of Electronic Publication: 2023 Jul 14 (Print Publication: 2023).
DOI:	10.1093/jlb/lsad022
Abstrakt:	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. (© The Author(s) 2023. Published by Oxford University Press on behalf of Duke University School of Law, Harvard Law School, Oxford University Press, and Stanford Law School.)
Databáze:	MEDLINE
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