Setting the Standard for Genomics and Health-Related Data Sharing: The Global Alliance for Genomics and Health

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Ethical, efficient sharing of federated genomic and health related data will transformdisease diagnosis and treatment, reveal new patterns in human biology, allow researchers to expand studies of cancer and common disease associations to less common and more detailed analyses, strengthen genomic variant interpretation in rare diseases, and enable more informed clinical decisions. However, lack of interoperability—both technical and regulatory—has resulted in data that is siloed by institution, country, and disease area, locking away their potential to contribute to research and medicine. The Global Alliance for Genomics and Health convenes the research and healthcare communities to agree on common methods for collecting, storing, transferring, accessing, and analyzing data in order to overcome these barriers, enable broad data sharing that transcends the boundaries of any single institution or country, and fulfill the human right of everyone to benefit from the advances of genomic research, as mandated by the Universal Declaration of Human Rights (Assembly 1948).