Genomic Data Sharing (eBook, ePUB)

Case Studies, Challenges, and Opportunities for Precision Medicine
Redaktion: Mccormick, Jennifer B.; Pathak, Jyotishman

• Format: ePub

Produktbeschreibung

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

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Produktdetails

• Verlag: Elsevier Science & Techn.
• Seitenzahl: 230
• Erscheinungstermin: 29. November 2022
• Englisch
• ISBN-13: 9780128198049
• Artikelnr.: 66754660

Inhaltsangabe

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