Люди не доверяют работающим с генетической информацией организациям
21st September 2020
Full article, as translated by Google Translate:
Russian scientists took part in YourDNAYourSay research project to study public views on the processing and access to genetic information. Its results showed that for the development of medical genetics, it is necessary to increase the level of public confidence in the use of genetic data. The work was published in the American Journal of Human Genetics.
To assess public attitudes towards genomic research and data sharing, a group of researchers from around the world conducted a survey, which was attended by 36,268 people from 22 countries. On average, two out of three respondents said they had 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 two professionals or organizations with their DNA and health information.
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 (India, the United States, China and Pakistan), the distinction between the level of trust of nonprofit and commercial researchers is less clear, and there is a greater understanding of the need to share data with commercial organizations.
“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, ”said one of the researchers Vera Izhevskaya, deputy director for scientific work of the Medico-Genetic Research Center. Academician N.P. Bochkova and Chairman of the Russian Society of Medical Geneticists.