Such data relies on public support, and a new study from the Society and Ethics Research group at Connecting Science and their collaborators found that much of the public is unfamiliar with genomic research and unwilling to participate in such research.
The study suggests that this lack of confidence could significantly thwart genomic research, which relies heavily on the ability for clinicians, non-profit and for-profit researchers to share genetic data with each other across the world.
The report contributes to policy for the Global Alliance for Genomics and Health (GA4GH), the international community standards organization for genomics.
The organization’s CEO, Peter Goodhand, said a global collaboration is the only way to fully understand genomics. “The community must develop harmonized 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."
A global perspective
The study, published in the American Journal of Human Genetics, is the largest ever survey on global public attitudes towards genomic research and data sharing.
The survey involved 36,268 individuals from 22 countries who speak 15 different languages.
“In general, publics across the world do not appear to be aware of, nor familiar with, the concepts of DNA, genetics, and genomics. Willingness to donate one’s DNA and health data for research is relatively low, and trust in the process of data’s being shared with multiple users (e.g., doctors, researchers, governments) is also low,” noted the authors.
Fewer than 30% of participants in Germany, Poland, Russia and Egypt said they trusted more than one user of data. While respondents in China, India, UK and Pakistan trusted multiple users more than 50% of the time.
Overall, about two in three respondents said they were unfamiliar with DNA, genetics and genomics. While 52% of people said they would donate their DNA and medical information anonymously to medical doctors, just one in three said they would donate it for use by for-profit companies. Just over 40% of respondents said they would trust at least two individuals or organizations with their DNA and health data.
The report noted that genetic information was not uniformly seen as different from other forms of health information, but there was an association between seeing genetic information as special in some way compared to other health data and increased willingness to share their data.
Genetics testing companies such as 23andMe are providing consumers with significant access to their personal genome.
A 23andMe spokesperson told NutraIngredients-USA that 80% of customers opt in to their research program. The program gives customers the option to share their data in an anonymous aggregate format with research collaborators. “This is overseen by a third party known as an Institutional Review Board, who makes sure we are conducting research ethically,” explained the spokesperson.
During the four-year partnership, GSK will use 23andMe’s genetic database to develop potential targets and treatments for human disease.
“The goal of the collaboration is to gather insights and discover novel drug targets driving disease progression and develop therapies,” GlaxoSmithKline said in a statement. GSK has invested $300 million in 23andMe.
“Our top priority is our customer, and empowering each individual with the options to participate in research. As always, customers choose whether or not to participate in research. Customers can choose to opt-in or opt-out at any time,” said 23andMe CEO Anne Wojcicki.
A loss of trust could be damaging
The report suggests that more work is needed to raise levels of public trust in how genetic data is used in order for that data to advance human health. The authors point out that the research is valuable for informing the development of international policy and practice for sharing genomic data.
Professor Anna Middleton, Head of Society and Ethics Research in Connecting Science at the Wellcome Genome Campus said, "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,” said the lead author of the study, adding, “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. 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."
Source: American Journal of Human Genetics
17 September 2020 doi.org/10.1016/j.ajhg.2020.08.023
“Global Public Perceptions of Genomic Data Sharing: What Shapes the Willingness to Donate DNA and Health Data?”
Authors: A. Middleton et al.