Genomic Data Sharing

Over the last decade increasing emphasis has been placed on biomedical data sharing, with the goal of making data sets available to a wide range of researchers. Genomic data sets are particularly vulnerable to security breaches and ethical and legal complications, and genomic data storage and access needs must comply with federal and state laws and regulations. However, it is equally important that the ethical, legal, political, and social issues (ELSI) including privacy and confidentiality, access, informed consent, and return of both individual and aggregate research results to participants are recognized and addressed.

Genomic Data Sharing: Case Studies, Challenges, and Opportunities for Precision Medicine provides a comprehensive overview of current and emerging issues in genomic data sharing as applied in new genomic research and precision medicine. Here, international leaders in genomic data sharing examine these issues in-depth, and offer practical case studies highlighting key successes, challenges, and opportunities. Existing genomic data sharing consortia discussed include the eMERGE Network, Undiagnosed Disease Network, Vanderbilt Biobank, Marshfield Clinic Biobank, Minnesota Authorization, Rochester Epidemiology Project, NIH sponsored biobanks, GINA, and Global Alliance for Genomics and Health (GA4GH). In addition to these perspectives from the front lines, this book provides succinct overviews of ethical, legal, social, and IT challenges relevant to research employing and sharing genomic data. Clinician investigators, clinicians affiliated with academic medical centers, policymakers, and regulators will also gain insight allowing them to navigate the increasingly complex ethical, social, and clinical landscape of genomic data sharing.

• Covers both technical and ELSI (ethical, legal, and social implications) perspectives on genomic data sharing
• Includes applied case studies of existing genomic data sharing consortia, including the eMERGE Network, Undiagnosed Disease Network, and the Global Alliance for Genomics and Health (GA4GH) among others
• Features chapter contributions from international leaders in genomic data sharing