Опубликованы результаты исследования отношения мировой общественности к использованию генетической информации о людях и обмену генетическими данными различными категориями исследователей
21st September 2020
Full article, as translated by Google Translate:
The results of a study of the attitude of the world community to the use of genetic information about people and the exchange of genetic data by various categories of researchers have been published
Analyzing genomic data among populations is central to understanding the role of genetic factors in health and disease. An article was published in The American Journal of Human Genetics (Q1 Web of Science, impact factor 9.89) with the participation of the deputy director for scientific work of the Moscow State Scientific Center V.L. Izhevskaya with the results of a study of the attitude of the world community to the use of genetic information about people and the exchange of genetic data by various categories of researchers.
To assess public attitudes towards genomic research and the exchange of genetic data, a group of community and ethics researchers from the Welcome Genome campus (Harvard, UK) and their colleagues from around the world, including researchers from Russia, conducted a survey in 15 languages, which was attended by 36 268 people from 22 countries. A large gap was found between the extent to which people are willing to trust their personal genetic and medical data to medical professionals, researchers from non-profit organizations and from commercial laboratories. The global nature of the study revealed some national characteristics, including those characteristic of Russia. It is shown that for the development of medical genetics, it is necessary to increase the level of 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, Jlvaro Mendes, Jelvaro Mendes, 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, Adorsia Tandrian 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).