Comparing Genomic Data Sharing Policies from the National Institutes of Health, Global Alliance, and Reg4All: Common Ground and Future Directions

Abstract

Genomic data sharing has become increasingly important with "big data" genomics. Successful genomic data sharing requires multiple stakeholders cooperating with one another. Using discourse analysis, I compared three proposed genomic data sharing policies created by the National Institutes of Health, Reg4All and the Global Alliance for Genomics and Health. Data producers, data users, funders, participants, and end users were differently involved in the policy development process leading to policies that prioritize different needs and interests in genomic data sharing. The NIH policy satisfies the interests of data users and funders; Reg4All's policy focuses on participants, end users, and data users, and the Global Alliance policy represents a compromise leaving all stakeholders somewhat satisfied. This analysis highlights how the policy options benefit the different stakeholders and suggests ways to create a system that more evenly addresses the concerns and interests of all stakeholders, allowing for more equitable genomic data sharing.