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Publication on the analysis of worldwide public trust indicators when collecting and sharing genomic data

Genome Medicine (IF 10.675) published the paper by an international team of authors, including V.L. Izhevskaya, Deputy Director of research.

Public trust is essential to the success of projects involving genomic and medical data collection, sharing and genomic research. This article presents the results of an analysis of Your DNA, Your Say online survey of 36'268 people from 22 countries about public views on sharing genomic data. More than 50% of participants in 20 of 22 countries found the provision of transparent information by researchers re “who would benefit from access to genomic data” the most important in boosting the confidence. Also important were the ability to withdraw their data and transparency about who used it and for what purpose. They found some similarities and differences in public opinion across the countries regarding specific indicators, with respondents from China and Russia differing most strongly from the respondents from other countries in their assessment of the value of the indicators discussed.

Milne, R., Morley, K.I., Almarri, M.A. et al. Demonstrating trustworthiness when collecting and sharing genomic data: public views across 22 countries. Genome Med 13, 92 (2021).