To understand how our genes affect health and disease, drug reactions, and much more, researchers need to share vast amounts of data from people in different parts of the world. This makes genomic research dependent on public trust and support.
Do people in general trust research? Are we willing to donate DNA and health information to researchers? Are we prepared to let researchers share the information with other researchers, perhaps in other parts of the world? Even with researchers at for-profit companies? These and other issues were recently examined in the largest study to date about the public’s attitudes to participating in research and sharing genetic information. The questionnaire was translated into 15 languages and answered by 36,268 people in 22 countries.
The majority of respondents are unwilling or unsure about donating DNA and health information to research. In general, the respondents are most willing to donate to research physicians, and least willing to donate to for-profit researchers. Less than half of the respondents say they trust data sharing between several users. The study also reveals differences between countries. In Germany, Poland, Russia and Egypt, for example, trust in data sharing between several users is significantly lower than in China, India, the United Kingdom and Pakistan.
The study contains many more results that are interesting. For example, people who claim to be familiar with genetics are more willing to donate DNA and health data. Especially those with personal experience of genetics, for example, as patients or as members of families with hereditary disease, or through one’s profession. However, a clear majority say they are unfamiliar with the concepts of DNA, genetics and genomics. You can read all the results in the article, which was recently published in The American Journal of Human Genetics.
What practical conclusions can we draw from the study? The authors of the article emphasize the importance of increasing the public’s familiarity with genomic research. Researchers need to build trust in data collection and sharing. They need to participate in dialogues that make it clear why they share large amounts of data globally. Why is it so important? It also needs to become more understandable why not only physicians can carry out the research. Why are collaborations with for-profit companies needed? Moreover, what significance can genetic techniques have for future patients?
Well-functioning genomic research thus needs well-functioning research communication. What then is good research communication? According to the article, it is not about pedagogically illustrating the molecular structure of DNA. Rather, it is about understanding the conditions and significance of genomic research for healthcare, patients, and society, as well as the role of industry in research and development.
Personally, I want to put it this way. Good research communication helps us see things more perspicuously. We need continuous overviews of interrelated parts of our own societies. We need to see our roles and relationships with each other in complex societies with different but intertwined activities, such as research, healthcare, industry, and much more. The need for perspicuous overviews also applies to the experts, whose specialties easily create one-sidedness.
In this context, let me cautiously warn against the instinctive reaction to believe that debate is the obvious form of research-communicative exchange of thoughts. Although debates have a role to play, they often serve as arenas for competing perspectives, all of which want to narrow our field of view. This is probably the last thing we need, if we want to open up for perspicuous understandings of ourselves as human beings, researchers, donors, entrepreneurs, healthcare professionals and patients. How do we relate to each other? How do I, as a donor of DNA to researchers, relate to the patients I want to help?
We need to think carefully about what it means to think freely, together, about common issues, such as the global sharing of genomic data.
Pär Segerdahl, Associate Professor at the Centre for Research Ethics & Bioethics and editor of the Ethics Blog.
Middleton A., Milne R. and Almarri M.A. et al. (2020). Global public perceptions of genomic data sharing: what shapes the willingness to donate DNA and health data? American Journal of Human Genetics. DOI:https://doi.org/10.1016/j.ajhg.2020.08.023
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