Responsible genomic data sharing: challenges and approaches
Front Cover -- Responsible Genomic Data Sharing -- Responsible Genomic Data Sharing -- Copyright -- Contents -- Contributors -- I - Privacy challengesin genomic data sharing -- 1 - Criticality of data sharing in genomic research and public views of genomic data sharing -- 1. Introduction -- 2. Advancing research and scientific knowledge -- 3. Importance of genomic data sharing in curing diseases -- 3.1 Rare disease perspective -- 3.2 Cancer perspective -- 3.3 Genome-wide association studies perspective -- 4. Impact of large-scale data sharing on basic research and discovery -- 4.1 The International HapMap Project -- 4.2 1000 Genomes Project -- 4.3 The Cancer Genome Atlas project -- 4.4 Encyclopedia of DNA Elements Project -- 4.5 Genotype-Tissue Expression Project -- 5. Reproducibility -- 6. Patient/public perspective -- Acknowledgments -- References -- 2 - Genomic data access policy models -- 1. Data-sharing policy developments -- 2. Open-access policy model -- 3. Controlled-access policy model -- 4. Registered-access policy model -- 5. Ongoing concerns and developments -- 5.1 Maintaining consent: Consent Codes -- 5.2 Data-sharing risk assessment: choosing the right access level -- References -- 3 - Information leaks in genomic data: inference attacks -- 1. Inference attacks on statistical genomic databases -- 2. Inference attacks on genomic data-sharing beacons -- 3. Inference attacks on kin genomic privacy -- 4. Inference attacks using genotype-phenotype associations -- 5. Conclusions -- Acknowledgments -- References -- 4 - Genealogical search using whole-genome genotype profiles -- 1. Introduction -- 2. History of personal genetic data -- 2.1 HapMap -- 2.2 1000 genomes Project -- 2.3 UK Biobank and beyond -- 3. Direct-to-consumer genetic companies -- 3.1 Early days -- 3.2 Growth -- 3.3 Current trends -- 3.4 GEDMatch and others.