Ученые РМАНПО приняли участие в глобальном изучении отношения мировой общественности к геномным исследованиям и обмену данными
22nd September 2020
Full article, as translated by Google Translate:
Scientists from RMANPO took part in a global study of the attitude of the world community to genomic research and data exchange
The American Journal of Human Genetics published an article “The future of genomic research is at risk without greater public confidence in the way genetic data is exchanged” (Middleton A., Milne R., Almarri M.A., et al.). On the part of the Russian Federation, the following took part in the study: Izhevskaya Vera Leonidovna , Doctor of Medical Sciences, Deputy Director for Research of the Federal State Budgetary Scientific Institution “MGNTs“, Chairman of the Russian Society of Medical Geneticists and Baranova Elena Evgenievna , Ph.D. genetics FGBOU DPO RMANPO Ministry of Health of Russia.
The largest ever study of global attitudes towards genomic research and data sharing shows that work is needed to increase public confidence in the use of genetic data.
To assess public attitudes towards genomic research and data sharing, researchers from the Society and Ethics Study Group and their colleagues from around the world conducted a survey called “Your DNA, Your Opinion,” which was attended by 36,268 people from 22 countries in 15 languages. The work contributes to the policy of the Global Alliance for Genomics and Health (GA4GH), the international organization for the standardization of genomics.
In total, about two out of three respondents said they had no idea what DNA, genetics, and genomics are. Just over half (52%) of people said they can provide DNA and medical information anonymously for use by doctors, and a third of those surveyed are willing to provide them for use by commercial companies. In general, only 42% of respondents are ready to entrust more than 2 specialists or organizations with their DNA and health information.
Dr. Richard Miln, study author from the Society and Ethics Study Group, notes: “Our study found a wide gap between how healthcare professionals on the one hand and nonprofit researchers on the other are trusted to use 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 over 50% in China, India, UK and Pakistan trust many users. In some countries – primarily India, to a lesser extent in the United States, China and Pakistan – the distinction between non-commercial and commercial research is less clear, so there is also a slightly greater understanding of the need to exchange 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 community must develop consistent approaches to sharing anonymous genetic and health data from millions of people across the full spectrum of human diversity. 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 Studies at 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 data point was originally human. 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, not vice versa.”