Description
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 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
Table of Contents
1. IntroductionJennifer B. McCormick and Jyotishman Pathak2. From Public Resources to Improving Health: How genomic data sharing empowers science and medicineLaura Lyman Rodriguez and Elena Marie Ghanaim3. Biobank case example: Marshfield ClinicCatherine A McCarty and Deanna Cross4. Multidirectional Genetic and Genomic Data Sharing in the All of Us Research ProgramKatherine Davison Blizinsky, Subhashini Chandrasekharan, Sonya Jooma, Jessica Reusch and Kimberly Ann Thomson5. A community approach to standards development: the Global Alliance for Genomics and Health (GA4GH)Angela Page, Melissa Haendel, and Robert R. Freimuth6. Clinical Genomic Data on FHIR®: Case Studies in the Development and Adoption of the Genomics Reporting Implementation GuideRobert Freimuth, Robert Milius, Mullai Murugan and May Terry7. Genomics Data SharingJudit Kumuthini, Lyndon Zass, Melek Chaouch, Faisal M. Fadlelmola, Nicola Mulder, Fouzia Radouani, Verena Ras, Chaimae Samtal, Milaine Sergaine, Dassen Sathan, Anisah Ghoorah, Raphael Sangeda, Liberata Mwita, Upendo Masamu, Samar Kamal Kassim, Zoe Gill, Zahra Mungloo-Dilmohamud, and Gordon Wells8. Data Standardization in the Omics fieldJudit Kumuthini, Lyndon Zass, Melek Chaouch, Zoe Gill, Verena Ras, Zahra Mungloo-Dilmohamud, Dassen Sathan, Anisah Ghoorah, Faisal Fadlelmola, Christopher Fields, John Van Horn, Fouzia Radouani, Melissa Konopko, Emile Chimusa, Shakuntala Baichoo9. Data Sharing: The Public's PerspectiveJames O'Leary10. Genetic Data Sharing in the View of the EU General Data Protection Regulation (GDPR) Pieter De Smet (LL.M.) – Mahsa Shabani (PhD)11. Genomic Data Sharing and Intellectual PropertyJorge L Contreras12. Genomic Data Sharing: Case Studies, Challenges, and Opportunities for Precision MedicineDimitri Patrinos, Michael Lang and Ma'n H. Zawati
