Majumder Mary A, Cook-Deegan Robert, McGuire Amy L
Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas, United States of America.
School for the Future of Innovation in Society, Arizona State University Washington Center, Washington, D.C., United States of America.
PLoS Biol. 2016 Nov 2;14(11):e2000206. doi: 10.1371/journal.pbio.2000206. eCollection 2016 Nov.
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.
对于采用真正的全球方法来利用科学改善人类健康而言,前景似乎从未如此美好,各国项目的领导人纷纷阐述了他们对全球相关项目网络的愿景。大量文献探讨了全球基因组数据共享的障碍,但一系列民意调查表明,科学界可能忽略了一个重大障碍:公众对跨国数据共享的潜在抵制。在美国的几项大型调查中,其他国家的大学研究人员被认为是最不可接受的数据用户群体,而一项刚刚完成的美国调查发现,与非美国研究人员数据访问相关的隐私和安全担忧显著增加。此外,对跨国界共享的支持减少并非美国独有,尽管美国以外有限的数据表明不同国家以及不同人口群体存在差异。抵制的可能根源包括对隐私和安全保护的担忧。建立公众支持的策略包括正面阐述全球数据共享的理由,解决隐私、安全和其他合理担忧,并更深入地调查公众关切。