A Human Rights Foundation for Global Data Sharing

While the need for huge datasets for health promotion, planning and prevention is no longer in question, the challenge is to assemble datasets across disciplinary, institutional, and geographical boundaries. Technologically-speaking, the “cloud” may have answered the petabytes prayers, but what about policy and law? To begin to address this challenge, the Global Alliance for Genomics and Health (GA4GH) has adopted a human rights approach. It queries the automatic application of bioethics approaches from the interventionist clinical trials milieu to data intensive science, that is, the presumption that biomedical research is harmful. Instead, the GA4GH Framework for Responsible Sharing of Genomics and Health-Related Data is founded on the human right to benefit from scientific progress and its applications. (Universal Declaration of Human Rights, 1948). What does the upholding of this human right adopted, signed and ratified in the International Covenant on Economic, Social and Cultural Rights (ICESCR, 1966; 164 countries) mean today? Can we resurrect and “activate” this hitherto dormant right? Can we mobilize the policies, the tools and the political will to inspire governments to respect this right and thereby foster and facilitate international data sharing?