Крупнейшее мировое исследование показало: люди не доверяют организациям, работающим с генетической информацией, и не желают участвовать в обмене генетическими данными

This article, "The world's largest study showed that people do not trust organizations that work with genetic information, and do not want to participate in the exchange of genetic data" appeared on the Russian website "Genetics Info"
17th September 2020

Full article, as translated by Google Translate:

The world's largest study showed that people do not trust organizations that work with genetic information, and do not want to participate in the exchange of genetic data

Russian scientists participated in a research project to study public views on the processing and access to genetic information - "YourDNAYourSay", in the Russian-language version "Your genes, you decide." The project was launched in 2016 by the Global Alliance for Genomics and Health (GA4GH), an international genomics standardization organization, and the Wellcome Genome Campus, Cambridge, UK. In our country, it is supported by the Russian Society of Medical Geneticists and executed by the Deputy Director for Scientific Work of the FSBSI "Medical Genetic Research Center named after Academician N.P. Bochkova ", MD V.L. Izhevskaya and Associate Professor of the Department of Medical Genetics of the Russian Medical Academy of Science and Technology of the Ministry of Health of the Russian Federation, Ph.D. E. E. Baranova.  

The largest ever study of the world's attitudes towards genetic information work and data exchange shows that the development of medical genetics requires increasing public confidence in the use of genetic data.

To assess public attitudes towards genomic research and data sharing, a team of community and ethics researchers at the Welcome Genome campus (Harvard, UK) and colleagues from around the world conducted a survey in 15 languages, involving 36,268 people from 22 countries.

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.

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.

Peter Goodhand, CEO of the Global Alliance for Genomics and Health (GA4GH), explains: “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 acceptance in society that the transfer and sharing of data benefits humanity so that public audiences can participate in discussions about how genomics will serve society. ”

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 originally belonged to 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. "

Vera Izhevskaya, deputy director for scientific work of the Moscow State Scientific Center, Chairman of the Russian Society of Medical Geneticists, MD: “Russia was the first to participate 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. "


Genetics Info, 2020. The world's largest study showed that people do not trust organizations that work with genetic information, and do not want to participate in the exchange of genetic data. Genetics Info.ru [online]. 17th September. Available from: https://genetics-info.ru/blogs/krupneyshiy-za-vsyu-istoriyu-opros-pokaza.... [Accessed: 27 October 2020]