Мировое исследование показало нежелание людей участвовать в обмене генетическими данными
22nd September 2020
Full article, as translated by Google Translate:
World study shows people’s reluctance to participate in the exchange of genetic data
A global study has shown that in Russia (and in some other countries) there is little trust in government and commercial organizations that work with genetic information. However, without an established system for the exchange and processing of data obtained in the course of medical and scientific research, the development of medical genetics will come to a standstill.
For the development of medical genetics, it is necessary to increase the level of public confidence in the use of genetic data. This is evidenced by the results of the largest-ever study YourDNAYourSay on the study of public views on the processing and access to genetic information. This was reported by the Russian Society of Medical Geneticists, which supported the project. It was supervised by the head of the society, deputy director for scientific work of the Medical Genetic Scientific Center named after acad. N.P. Bochkova Vera Izhevskaya .
To assess public attitudes towards genomic research and data exchange, a survey was conducted in 15 languages, in which 36,268 people from 22 countries took part.
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.
“Our research has found a wide gap between how much trust medical professionals and nonprofit researchers have for personal genetic and medical information. 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, ”said the study’s British author Richard Milne .
The national characteristics of the survey results are as follows: less than 30% of participants from Germany, Poland, Russia and Egypt said they trust more than one recipient of the data; while in China, India, UK and Pakistan more than 50% of respondents trust multiple users. In some countries, primarily in 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, there is a greater understanding of the need to exchange data with commercial organizations.
Global Alliance for Genomics and Health (GA4GH) CEO Peter Goodhand spoke of the need for broad international cooperation of geneticists : “Without global cooperation, no research institution or country can fully understand how genes and the environment interact to cause disease. The professional community must develop consistent approaches to the exchange of anonymous genetic and health data from millions of people. ” He was supported by the lead author of the study, Anna Middleton : “Genomic research is the science of big data, and you can easily forget that each part of it originally belonged to an individual person.”
“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 Vera Izhevskaya .
The YourDNAYourSay study (“Your genes, you decide”) 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).