Международное исследование «YourDNAYourSay» показало: необходимо повышать уровень доверия общества к обмену геномными данными
23rd September 2020
Full article, as translated by Google Translate:
The international study “YourDNAYourSay” showed: it is necessary to increase the level of public confidence in the exchange of genomic data
To assess society’s attitude towards genomic research and data exchange, an international group of scientists, including Russian researchers, conducted a survey in 15 languages, which was attended by 36,268 people from 22 countries.
The study of the attitude of the world community to the work of genetic information and the exchange of data showed that for the development of medical genetics, it is necessary to increase the level of public confidence in the use of genetic data.
On average, two out of three respondents said they have no idea what DNA, genetics, and genomics are. At the same time, 52% answered that they can provide their DNA and medical information anonymously for use by doctors. Only a third of respondents were willing to provide such data to commercial companies. Overall, only 42% of respondents said they were willing to provide more than 2 professionals or organizations with their DNA and health information.
The research project to study public views on the processing and access to genetic information – “YourDNAYourSay”, in the Russian version “Your genes, you decide”, was launched in 2016 by the non-profit organization “Global Alliance for Genomics and Health” (GA4GH), an international organization Genomics Standardization and Wellcome Genome Campus Research Center (Harvard, UK) . In our country, the project was supported by the Russian Society of Medical Geneticists and carried out by the Deputy Director for Scientific Work of the V.I. Academician N.P. Bochkova, Chairman of the Russian Society of Medical Geneticists Vera Izhevskaya and Associate Professor of the Department of Medical Genetics of the Russian Medical Academy of Continuing Professional Education Ministry of Health of the Russian Federation by Elena Baranova.
“For the first time, Russia has participated in such a large-scale project to study public opinion on the exchange of genomic data, which made it possible to compare the attitude of people in different countries to this topic. Interest in the development of genomic technologies is growing, and the research results are extremely important. They show that society is not ready to accept genetic technologies and speak of the need to form a positive public opinion, which is necessary for the effective development and use of genetic technologies in medicine, ”commented Vera Izhevskaya.
Dr. Richard Miln, study author from the Society and Ethics Research Group, notes: “Our study found a wide gap between the level of confidence that healthcare professionals and nonprofit researchers have in their personal genetic and medical data. Given the prevalence of public-private partnerships in many countries, this problem needs to be addressed because for the development of genomics and the improvement of human health, the data must be open to all researchers. ”
The global nature of the study revealed some national characteristics. Less than 30% of participants from Germany, Poland, Russia and Egypt said they trust more than one recipient of the data; while more than 50% of respondents in China, India, UK and Pakistan trust multiple users. In some countries – primarily India, and to a lesser extent in the United States, China and Pakistan – the distinction between the level of trust of non-profit and commercial researchers is less clear, and there is a greater understanding of the need to share data with commercial organizations.
“Without global collaboration, no research institution or country can fully understand how genes and the environment interact to cause disease. The professional community must develop coordinated approaches to the exchange of anonymous genetic and health data from millions of people. We need to achieve widespread public acceptance that the transfer and sharing of data benefits humanity, so that public audiences can participate in discussions about how genomics will serve society , ”explains Peter Goodhand, CEO of the Global Alliance for Genomics and Health (GA4GH). …
Professor Anna Middleton, Head of Society and Ethics Research at the Wellcome Genome Campus and lead author of the study, said: “Genomic research is the science of big data, and it’s easy to forget that every part of it was originally owned by an individual. We have shown that public willingness to provide genomic data and trust in data sharing is low worldwide; it’s time for researchers to take this seriously. The loss of global trust can irreparably damage our ability to conduct genomic research, reducing access to public goods. Genomic research exists to serve society.”
More information about the research results can be found here.