Responsible Genomic Data Sharing

Responsible Genomic Data Sharing: Challenges and Approaches brings together international experts in genomics research, bioinformatics and digital security who analyze common challenges in genomic data sharing, privacy preserving technologies, and best practices for large-scale genomic data sharing. Practical case studies, including the Global Alliance for Genomics and Health, the Beacon Network, and the Matchmaker Exchange, are discussed in-depth, illuminating pathways forward for new genomic data sharing efforts across research and clinical practice, industry and academia.

• Addresses privacy preserving technologies and how they can be applied to enable responsible genomic data sharing
• Employs illustrative case studies and analyzes emerging genomic data sharing efforts, common challenges and lessons learned
• Features chapter contributions from international experts in responsible approaches to genomic data sharing

Active clinical and translational researchers across genetics, genomics, molecular biology, molecular diagnostics, and bioinformatics; pharmacologists; genetic counselors. Students at the graduate level and above in genetics, genomics, bioinformatics, molecular biology, and pharmaceutical science

Section I: Privacy Challenges in Genomic Data Sharing
1. Criticality of data sharing in genomic research
Dr. Goncalo Abecasis, University of Michigan, or Nancy Cox, Vanderbilt University
2. Public views of genomic data sharing
Dr. Anna Middleton, Sanger Institute UK
3. Ethics issues in genomic data sharing (informed consent, patient-centric view, etc)
Cinnamon Bloss/ Dav Fox
4. models of sharing genomic data (controlled access, registered users and open access)
Dr. Stephanie Dyke, University of McGill
5. Information leaks in aggregate genomic data, inference attacks
Dr. Erman Ayday, Case Western Reserve University

Section II: Privacy-Preserving Techniques for Responsible Genomic Data Sharing
6. Overview
Dr. Kristin Lauter, MIcrosoft Research
7. Homomorphic encryption
Kim Laine, Microsoft Research
8. SMC
Yan Huang, Indiana University
9. DP, LLR test, etc
Anand Sarwate, Rutgers University
10. Game theory approach
Malin Bradley, Vanderbilt University
11. Hardware (SGX)
Mona Vij, Intel

Section III: Practices of Responsible Genomic Data Sharing
12. Genomic data sharing within large genomic research consortium (e.g, ICGC)
Lincoln Stein, Ontario Institute for Cancer Research
13. GA4GH: Building tools and standards for responsible genomic data sharing
Dixie Baker, Martin, Blanck and Associates
14. Beacon
Marc Fiume, DNAStack
15. Matchmaker exchange for rare disease patients
Dr. Ada Hamosh, Johns Hopkins University
16. ExAC (exome consortium)
Dr. Daniel MacArthur, Harvard Medical School