Abstract
Prospects have never seemed better for a truly global approach to science to improve human health, with leaders of national initiatives laying out their vision of a worldwide network of related projects. An extensive literature addresses obstacles to global genomic data sharing, yet a series of public polls suggests that the scientific community may be overlooking a significant barrier: potential public resistance to data sharing across national borders. In several large United States surveys, university researchers in other countries were deemed the least acceptable group of data users, and a just-completed US survey found a marked increase in privacy and security concerns related to data access by non-US researchers. Furthermore, diminished support for sharing beyond national borders is not unique to the US, although the limited data from outside the US suggest variation across countries as well as demographic groups. Possible sources of resistance include apprehension about privacy and security protections. Strategies for building public support include making the affirmative case for global data sharing, addressing privacy, security, and other legitimate concerns, and investigating public concerns in greater depth.
Highlights
Prospects have never seemed better for a truly global approach to science to improve human health. In laying out their vision for President Obama’s Precision Medicine Initiative, Francis Collins and Harold Varmus noted, “efforts should ideally extend beyond our borders, through collaborations with related projects around the world” [1]
This vision is undergirded by a track record of success with a series of projects initially conceived of and carried out as international collaborations, including the Human Genome Project, the International HapMap, ENCODE, and 1000 Genomes
Article 1 of the Universal Declaration on the Human Genome and Human Rights states: "The human genome underlies the fundamental unity of all members of the human family, as well as the recognition of their inherent dignity and diversity. It is the heritage of humanity" [13]. This universal human rights perspective informs the work of the Global Alliance, including its Framework for Responsible Sharing of Genomic and HealthRelated Data [4]
Summary
Prospects have never seemed better for a truly global approach to science to improve human health. We explore the normative foundations of global data sharing and suggest strategies to address the disconnect between scientific and clinical aspirations and the apparent public concern about international data sharing.
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