Beyond Our Borders? Public Resistance to Global Genomic Data Sharing

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.

当下，以真正全球化的科学路径改善人类健康的前景从未如此光明——各国国家级科研计划的牵头者正共同勾勒出一张覆盖全球的关联项目网络蓝图。现有海量学术文献已探讨全球基因组数据（Genomic Data）共享面临的各类阻碍，但一系列公众民意调研显示，科学界或已忽视一项关键障碍：公众对跨境数据共享的潜在抵触情绪。在多项美国大型调研中，境外高校研究者被视为最不受认可的数据使用者群体；而一项新近完成的美国民调显示，公众对非美研究者获取数据的隐私与安全担忧显著加剧。此外，对跨境数据共享的支持率下滑并非仅存在于美国，尽管美国以外地区的有限调研数据显示，不同国家与不同人口群体间的态度均存在差异。公众抵触情绪的潜在诱因包括对隐私与安全保障的忧虑。而旨在争取公众支持的策略则包括：阐明全球数据共享的积极意义、回应隐私、安全及其他合理关切，以及更深入地调研公众的顾虑。