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Abstract
SummaryAnalyzing 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.
Highlights
Responsible data sharing supported by trustworthy data governance can support the equitable delivery of genomic medicine and the right of everyone to benefit from scientific research
We grouped ‘‘DNA, genetics, and genomics’’ into one concept in the question about familiarity in our survey so that participants could see that the terms were linked, even if they had only heard of one of them, and we summarize this in the Results as ‘‘familiarity with genetics.’’ A second factor is one’s beliefs about genomic data’s being different from other health data
The ‘‘Your DNA, Your Say’’ project is a very large social sciences study conducted on global public attitudes toward genomic data sharing; it involves a whole mixture of countries with different health systems, population characteristics, and variation in the availability of genomic technology and research
Summary
Analyzing genomic and health data across populations is central to understanding the involvement of genetic factors in health and disease. Responsible data sharing supported by trustworthy data governance can support the equitable delivery of genomic medicine and the right of everyone to benefit from scientific research.3,4The success of data sharing relies on public support and trust. Collecting and sharing data brings to the forefront issues of privacy and questions about exploitation and uneven global distributions of scientific resources, both past and present. Data sharing should be accompanied by an understanding of how members of the public, as donors of data, see and support the process of data sharing. For example, there is public hesitancy about connections between public and for-profit sectors in genomic and health research. research into public perceptions of genomics and biomedical data is dominated by studies from Europe and North America and rarely enables comparative study.. Analyzing genomic and health data across populations is central to understanding the involvement of genetic factors in health and disease.. Responsible data sharing supported by trustworthy data governance can support the equitable delivery of genomic medicine and the right of everyone to benefit from scientific research.. The success of data sharing relies on public support and trust.. Collecting and sharing data brings to the forefront issues of privacy and questions about exploitation and uneven global distributions of scientific resources, both past and present.. Data sharing should be accompanied by an understanding of how members of the public, as donors of data, see and support the process of data sharing.. Research into public perceptions of genomics and biomedical data is dominated by studies from Europe and North America and rarely enables comparative study.
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