Making data broadly accessible is essential to creating a medical information commons (MIC). Transparency about data-sharing practices can cultivate trust among prospective and existing MIC participants. We present an analysis of 34 initiatives sharing DNA-derived data based on public information. We describe data-sharing practices captured, including practices related to consent, privacy and security, data access, oversight, and participant engagement. Our results reveal that data-sharing initiatives have some distance to go in achieving transparency.
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The 34 initiatives reviewed, in alphabetical order, were: Altruist Database; Alzheimer's Disease Neuroimaging Initiative; AmbryShare; Cancer Genome Characterization Initiative; CF Foundation Patient Registry; Colon Cancer Family Registry; Coronary Artery Risk Development in Young Adults; Critical Path Institute CPAD; Database of Chromosomal Imbalance and Phenotype in Humans Using Ensembl Resources; Duchenne Registry; Framingham Heart Study; Genes for Good; Global FKRP Registry; HEROIC Registry; Jackson Heart Study; Kaiser Permanente Research Bank; Metastatic Breast Cancer Project; MSSNG; Multiple Myeloma Research Foundation Researcher Gateway; MyVHL: Patient Natural History Study; Open Humans; openSNP; PAH Biobank; Parkinson's Progression Markers Initiative; Personalized Medicine Research Project Database; Project GENIE; Psychiatric Genomics Consortium; Rare Epilepsy Network; Simons Foundation Autism Research Initiative (SFARI Base); Texas Alzheimer's Research and Care Consortium; Texas Cancer Research Biobank; The Genographic Project DNA Analysis Repository; The Harvard Personal Genome Project; Wisconsin Registry for Alzheimer's Prevention.
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