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

Langue : Anglais
Couverture de l’ouvrage Genomic Data Sharing
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.

1. Introduction Jennifer B. McCormick and Jyotishman Pathak 2. From Public Resources to Improving Health: How genomic data sharing empowers science and medicine Laura Lyman Rodriguez and Elena Marie Ghanaim 3. Biobank case example: Marshfield Clinic Catherine A McCarty and Deanna Cross 4. Multidirectional Genetic and Genomic Data Sharing in the All of Us Research Program Katherine Davison Blizinsky, Subhashini Chandrasekharan, Sonya Jooma, Jessica Reusch and Kimberly Ann Thomson 5. A community approach to standards development: the Global Alliance for Genomics and Health (GA4GH) Angela Page, Melissa Haendel, and Robert R. Freimuth 6. Clinical Genomic Data on FHIR®: Case Studies in the Development and Adoption of the Genomics Reporting Implementation Guide Robert Freimuth, Robert Milius, Mullai Murugan and May Terry 7. Genomics Data Sharing Judit 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 Wells 8. Data Standardization in the Omics field Judit 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 Baichoo 9. Data Sharing: The Public’s Perspective James O'Leary 10. 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 Property Jorge L Contreras 12. Genomic Data Sharing: Case Studies, Challenges, and Opportunities for Precision Medicine Dimitri Patrinos, Michael Lang and Ma’n H. Zawati

Active researchers, basic and translational scientists, clinicians, postgraduates, and students in the areas of genetics, human genomics, pathology and bioinformatics; medical students, pediatricians; internal medicine physicians and residents; genetic counselors, and genetic counseling students; clinical and laboratory genetics trainees (residents and fellows); law students and legal professionals; students and professional in biomedical ethics, research ethics, public policy, and regulatory practice

Dr. McCormick is an interdisciplinary academic having completed a doctorate degree in molecular and cellular biology, postdoctoral fellowship in biological chemistry, masters’ degree in public policy, and NIH Center of Excellence in ELSI Research fellowship. She conducts empirical studies examining the policy implications and ethical challenges of translating research into clinical care and public health. Much of her work focuses on the ethical, legal, political, and social implications of medical record and genomic data sharing, the challenges to protecting participants’ privacy and confidentiality in the era of ‘big data’, and the ethical complexities presented by translating genomic research findings into clinical and public health domains. She has also been involved in initiatives aimed at enhancing human participation in research and promoting professionalism and social responsibility in biomedical research. She lectures frequently on topics related to research and translational research ethics, translational genomics, and social responsibility and policy. She has published on topics related to research ethics consultation, genetic and genomic research and biobanking, human research participant engagement and protection, and challenges in translational research. Beyond Sputnik: US Science Policy in the 21st Century (Neal, Smith, and McCormick) is considered one of the first general textbooks on national science policy and is used in science policy training and fellowship programs.
Dr. Pathak is the Frances & John L. Loeb Professor of Medical Informatics and the Chief of Division of Health Informatics at Weill Cornell Medicine, Cornell University, New York. Prior to joining Weill Cornell, he was the Professor of Biomedical Informatics at Mayo Clinic in Rochester, Minnesota (2007-2015) where he led two major NIH/HHS funded initiatives—the Electronic Medical Records and Genomics (eMERGE) and Strategic Health IT Research Project (SHARP) projects—which have pion
  • 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