Genomic Data Sharing: Case Studies, Challenges, and Opportunities for Precision Medicine

Genomic Data Sharing: Case Studies, Challenges, and Opportunities for Precision Medicine provides a comprehensive overview of current and emerging issues in genomic data sharing. In this book, international leaders in genomic data examine these issues in-depth, offering practical case studies that highlight key successes, challenges and opportunities. Sections discuss 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 frontlines, the book also provides succinct overviews of ethical, legal, social and IT challenges. Clinician investigators, clinicians affiliated with academic medical centers, policymakers and regulators will also gain insights that will allow 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 sharingIncludes 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 othersFeatures chapter contributions from international leaders in genomic data sharing INDICE: 1. Introduction 2. Consortium example: eMERGE Network 3. Consortium example: Undiagnosed Disease Network 4. Biobank example: Vanderbilt 5. Biobank example: Marshfield Clinic 6. State Law: Minnesota Authorization and the Rochester Epidemiology Project 7. US Regulatory frameworks: Convergence of HIPAA and NIH Data sharing Policy 8. US Regulatory frameworks: GINA 9. An international alliance: Global Alliance for Genomics and Health (GA4GH) 10. Security: Whose perspective matters? 11. Data governance: What does it mean and who are the stakeholders? 12. Concluding Chapter

• ISBN: 978-0-12-819803-2
• Editorial: Academic Press
• Encuadernacion: Rústica
• Páginas: 360
• Fecha Publicación: 01/10/2020
• Nº Volúmenes: 1
• Idioma: Inglés