Building the Medical Information Commons: Participant Engagement and Policy

Many public and private initiatives are underway to collect and share genomic, personal, and medical data on a massive scale for research and clinical use. Ideally, these efforts will contribute to the creation of a medical information commons, a comprehensive networked data resource widely available for research and clinical care. The success and value of a medical information commons will depend on developing effective policies and practices to address longstanding concerns about privacy, security, and data ownership.

Through a National Human Genome Research Institute project, AIR supported the Baylor College of Medicine in using deliberative methods to obtain informed public input on the values, rights, and interests of individuals whose data may populate the information commons. AIR developed background materials, conducted cognitive testing of materials, and enrolled participants for Citizens’ Panels at three sites to present integrated analyses of governance models to understand stakeholder views.

AIR researchers coauthored a Journal of Law, Medicine & Ethics article—Hopeful and Concerned: Public Input on Building a Trustworthy Medical Information Commons—finding that people support sharing personal information, including genetic data, to improve health and health care but worry about discrimination and other inappropriate uses without strong privacy safeguards. Overall, participants concluded that ensuring the benefits and harms of “biomedical big data” are shared equitably is an important guiding principle for medical information commons.