The results of the study on the global public perceptions of genetic data sharing about people and exchange of genetic data by different categories of researchers were published
Analysis of genomic data among populations is central to understanding the role of genetic factors in health and disease. The American Journal of Human Genetics (Q1 Web of Science, Impact-factor 9.89) published an article with the results of the study on global public perceptions of genetic data sharing about people and exchange of genetic data by different categories of researchers. V.L. Izhevskaya, the FSBI RCMG Deputy Director for Research was involved in writing thereof.
To assess society's perception of genomic research and exchange of genetic data, the Welcome Genome campus (Harvard, UK) social and ethical expert group and their colleagues from around the world, including Russian researchers, conducted a survey in 15 languages, which was attended by 36,268 people from 22 countries. They found a wide gap between how people were willing to trust their personal genetic and medical data to medical professionals, researchers from non-profit organizations and commercial laboratories. The global nature of the study revealed some national features, including those specific to Russia. The research has shown that development of medical genetics needs to increase public confidence in the use of genetic data.
Global Public Perceptions of Genomic Data Sharing: What Shapes the Willingness to Donate DNA and Health Data?
Anna Middleton, Richard Milne, Mohamed A.Almarri, Shamim Anwer, Jerome Atutornu, Elena E.Baranova, Paul Bevan, Maria Cerezo, Yali Cong, Christine Critchley, Josepine Fernow, Peter Goodhand, Qurratulain Hasan, Aiko Hibino, Gry Houeland, Heidi C.Howard, S. Zakir Hussain, Charlotta Ingvoldstad Malmgren, Vera .Izhevskaya, Aleksandra Jędrzejak, Cao Jinhong, Megumi Kimura, Erika Kleiderman, Brandi Leach, Keying Liu, Deborah Mascalzoni, Álvaro Mendes, Jusaku Minari, Nan Wang, Dianne Nicol, Emilia Niemiec, Christine Patch, Jack Pollard, Barbara Prainsack, Marie Rivière, Lauren Robarts, Jonathan Roberts, Virginia Romano, Haytham A.Sheerah, James Smith, Alexandra Soulier, Claire Steed, Vigdís Stefànsdóttir, Cornelia Tandre, Adrian Thorogood, Torsten H.Voigt, Anne V.West, Go Yoshizawa, Katherine I.Morley.
Middleton et al., Global Public Perceptions of Genomic Data Sharing: What Shapes the Willingness to Donate DNA and Health Data? The American Journal of Human Genetics (2020).