More work is needed to raise levels of public trust in how genomic data is used, according to the largest undertaken yet about attitudes towards genomic research.
Researchers from the Society and Ethics Research group at Connecting Science and their collaborators found that fewer than half of the 36,268 members of the public across 22 countries who participated said they would be happy for their genetic information to be shared for more than one purpose.
The study, published yesterday (17 September 2020) in the American Journal of Human Genetics, says lack of trust in how data is shared with could significantly hinder genomic research because it relies on clinicians, non-profit and for-profit researchers being able to share genetic data with each other across the world.
The Your DNA, Your Say survey, which was translated into 15 languages, found that about two-thirds of respondents said they were unfamiliar with DNA, genetics and genomics.
While 52% said they would donate anonymous DNA and medical information for use by medical doctors, just one in three said they would donate it for use by for-profit companies. 42% of respondents said they would trust at least two individuals or organisations with their DNA and health information.
Study author Dr Richard Milne, of the Connecting Science’s Society and Ethics Research group, said: “Our survey found a wide gap between how medical professionals on one hand and for-profit researchers on the other are trusted to use personal genetic and healthcare data.
“Given the prevalence of public-private partnerships in many countries, this is a problem that needs to be addressed – because the benefits to human health that genomics provides requires data to be open to all researchers.”
Fewer than 30% of participants in Germany, Poland, Russia and Egypt said they trusted more than one user of data. This compares with China, India, UK and Pakistan, where more than 50% said they would trust multiple users.
Respondents from India, USA, China and Pakistan had less regard for the distinction between non-profit and for-profit research and a higher acceptance of the need to share data with for-profit organisations.
Peter Goodhand, CEO of the Global Alliance for Genomics and Health (GA4GH), said: “The community must develop harmonised approaches to the sharing of anonymised genetic and healthcare data from millions of individuals, representing the whole spectrum of human diversity. We must build broad societal acceptance that donation and sharing of data is of benefit to humankind, so that public audiences can be part of the conversation that determines how genomics will deliver the best outcomes for society.”
Lead author Professor Anna Middleton, head of Society and Ethics Research in Connecting Science at the Wellcome Genome Campus, said it was time for the research community to take people’s concerns seriously.
“Genomic research is at heart a Big Data science, but it can be easy to forget that each data point originally belonged to a human being. We have shown that public willingness to donate genomic data and trust in data sharing is low around the globe; it is time for the research community to take this seriously,” she said.
“A loss of a global trust could irreparably damage our ability to carry out genomic research, stalling access to important societal benefits. Genomic research exists to serve society, not the other way around.”
Middleton A, Milne R, Almarri MA et al. Global public perceptions of genomic data sharing: what shapes the willingness to donate DNA and health data? American Journal of Human Genetics 16 September 2020.
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