Reinforcing international data sharing in genomics with Human Rights

Genomic data are being generated at an unprecedented pace as sequencing costs fall. The generation and subsequent interpretation of these data, linked with other types of data sets, are leading to new knowledge, diagnostics, and therapies. But too much of these data are collected,stored, and regulated in silos – national, institutional and disease-specific. The long-term success of genomic research and medicine requires an internationally respected and workable framework that facilitates sharing of genomic and health-related data in a responsible manner. Human rights established in international law have been proposed as a basis for data sharing among researchers,including the right to benefit from the advances of science and the right to recognition for scientific contributions. The Global Alliance for Genomics and Health (GA4GH) is a non-profit international 78 organization dedicated to improving human health through the acceleration of data sharing. Through its Framework for Responsible Sharing of Genomic and Health-Related Data and specific Policies, the GA4GH has clarified the contents of these human rights in the context of genomic research,particularly with regard to the right of researchers to have access to and share genomic and health relateddata.