50% опрошенных оказались готовы делиться своими генетическими данными только анонимно
24th September 2020
Full article, as translated by Google Translate:
50% of those surveyed were ready to share their genetic data only anonymously
Scientists conclude that it is necessary to increase the level of public confidence in genetic technologies
In the course of the YourDNAYourSay study, scientists found out that the society is still quite wary of working with genetic data. Only about half of the respondents are ready to provide information of this kind even anonymously to doctors, writes the press service of the Ministry of Science and Higher Education (Ministry of Education and Science).
“The results of the study 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, deputy director for scientific work of the Medical Genetic Research Center named after Bochkova.
The authors of the study interviewed more than 36 thousand people from 22 countries. According to the survey results, on average, two out of three respondents said they did not know what DNA, genetics and genomics are. 52% answered that they can only provide their DNA and medical information to doctors anonymously, and only a third of respondents were willing to provide such data to commercial companies. 42% were willing to share their DNA and health information with more than two professionals or organizations.
Scientists have also established some national characteristics of attitudes towards genetic data. For example, in Germany, Poland, Russia and Egypt, less than 30% of participants said they trust more than one recipient of the data. Moreover, in China, India, Great Britain and Pakistan, more than 50% of respondents trust many 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 in non-profit and commercial researchers is less clear. The respondents there also better understand why it is necessary to exchange data with commercial organizations.
The YourDNAYourSay (Your DNA, You Decide) project was launched in 2016 by the Global Alliance for Genomics and Health (GA4GH), a non-profit organization. It is an international genomics standardization organization and research facility at the Wellcome Genome Campus (Harvard, UK).