Analyzing genomic data across populations is central to understanding the role of genetic factors in health and disease. Successful data sharing relies on public support, which requires attention to whether people around the world are willing to donate their data that are then subsequently shared with others for research. However, studies of such public perceptions are geographically limited and do not enable comparison. This paper presents results from a very large public survey on attitudes toward genomic data sharing. Data from 36,268 individuals across 22 countries (gathered in 15 languages) are presented. In general, publics across the world do not appear to be aware of, nor familiar with, the concepts of DNA, genetics, and genomics. Willingness to donate one’s DNA and health data for research is relatively low, and trust in the process of data’s being shared with multiple users (e.g., doctors, researchers, governments) is also low. Participants were most willing to donate DNA or health information for research when the recipient was specified as a medical doctor and least willing to donate when the recipient was a for-profit researcher. Those who were familiar with genetics and who were trusting of the users asking for data were more likely to be willing to donate. However, less than half of participants trusted more than one potential user of data, although this varied across countries. Genetic information was not uniformly seen as different from other forms of health information, but there was an association between seeing genetic information as special in some way compared to other health data and increased willingness to donate. The global perspective provided by our “Your DNA, Your Say” study is valuable for informing the development of international policy and practice for sharing genomic data. It highlights that the research community not only needs to be worthy of trust by the public, but also urgent steps need to be taken to authentically communicate why genomic research is necessary and how data donation, and subsequent sharing, is integral to this.

分析整个人群的基因组数据对于了解遗传因素在健康和疾病中的作用至关重要。成功的数据共享取决于公众的支持，这需要关注世界各地的人们是否愿意捐赠其数据，然后将其共享给其他人进行研究。但是，对这种公众看法的研究在地理上受到限制，无法进行比较。本文介绍了有关基因组数据共享态度的大型公众调查的结果。显示了来自22个国家/地区的36268位个人的数据（以15种语言收集）。通常，全世界的公众似乎都不了解也不熟悉DNA，遗传学和基因组学的概念。捐献自己的DNA和健康数据进行研究的意愿相对较低，并且与多个用户（例如，医生，研究人员，政府）共享数据的过程的信任度也很低。当接受者被指定为医生时，参与者最愿意捐赠DNA或健康信息用于研究，而当接受者是营利性研究者时，参与者则最不愿意捐赠。那些熟悉遗传学并信任要求数据的用户的人更愿意捐赠。但是，不到一半的参与者信任不止一个潜在的数据用户，尽管各国的情况各不相同。遗传信息并未统一地被视为与其他形式的健康信息有所不同，但是在将遗传信息与其他健康数据相比以某种方式视为特殊与捐赠意愿之间存在关联。我们的“您的DNA，您说的话”研究提供的全球视野对于指导国际基因组数据共享政策和实践的发展非常有价值。它强调指出，研究界不仅需要得到公众的信任，而且还需要采取紧急措施来真实地传达为什么需要基因组研究以及如何将数据捐赠以及随后的共享整合到一起。