Future of genomic research at risk without greater public trust in how genetic data is shared
Survey finds lack of familiarity with genomics and how it can benefit society
The largest ever survey on global public attitudes towards genomic research and data sharing suggests that work is needed to raise levels of public trust in how genetic data is used in order for that data to fulfil its promise to advance human health and medicine.
Researchers from the Society and Ethics Research group at Connecting Science and their collaborators found that less than half of those surveyed would be happy for their genetic information to be shared for more than one purpose.
The study, published today (17 September) in the American Journal of Human Genetics, highlights the extent to which public audiences are unfamiliar with, and unwilling to participate in, genomic research. This lack of trust in who data is shared with could significantly hinder genomic research, which relies on the ability for clinicians, non-profit and for-profit researchers to share genetic data with each other across the world.
To gauge public attitudes towards genomic research and data sharing, researchers in the Society and Ethics Research Group and collaborators across the world delivered the ‘Your DNA, Your Say’ survey, which was completed by 36,268 members of the public across 22 countries and in 15 languages. The work contributes to policy for the Global Alliance for Genomics and Health (GA4GH), the international community standards organization for genomics.
In total, around two in three respondents said they were unfamiliar with DNA, genetics and genomics. While 52 per cent of people 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. Overall, just 42 per cent of respondents said they would trust at least two individuals or organisations with their DNA and health information.
“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.”
Dr Richard Milne, an author of the study from Connecting Science’s Society and Ethics Research group
The global nature of the study revealed some national idiosyncrasies. Fewer than 30 per cent of participants in Germany, Poland, Russia and Egypt said they trusted more than one user of data; whereas more than 50 per cent in China, India, UK and Pakistan trusted multiple users. In some countries – most notably India, but to a lesser extent the USA, China and Pakistan – the distinction between non-profit and for-profit research is less distinct, with slightly greater acceptance of the need to share data with for-profit organisations.
“No single research institute or country will be able to fully understand how genes and environment interact to cause disease without global collaboration. 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.”
Peter Goodhand, CEO of the Global Alliance for Genomics and Health (GA4GH)
“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. 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.”
Professor Anna Middleton, Head of Society and Ethics Research in Connecting Science at the Wellcome Genome Campus and lead author of the study
Middleton A., Milne R. and Almarri M.A. et al. (2020). Global public perceptions of genomic data sharing: what shapes the willingness to donate DNA and health data? American Journal of Human Genetics. DOI: https://doi.org/10.1016/j.ajhg.2020.08.023
This research was supported by Wellcome (grant 206194).
Your DNA Your Say is a global social sciences project led by the Society and Ethics Research Group, Connecting Science at the Wellcome Genome Campus, Cambridge, UK. YDYS is part of the participant values task team of GA4GH. The project website is here; Follow us on Twitter and see our Blog
Film overview of the Your DNA Your Say project and translations: https://youtu.be/Dpl3DX0CvLg
The Global Alliance for Genomics and Health (GA4GH) is an international, nonprofit alliance formed in 2013 to accelerate the potential of research and medicine to advance human health. Bringing together 600+ leading organizations working in healthcare, research, patient advocacy, life science, and information technology, the GA4GH community is working together to create frameworks and standards to enable the responsible, voluntary, and secure sharing of genomic and health-related data. All of our work builds upon the Framework for Responsible Sharing of Genomic and Health-Related Data.
Wellcome Genome Campus Connecting Science’s mission is to enable everyone to explore genomic science and its impact on research, health and society.
We connect researchers, health professionals and the wider public, creating opportunities and spaces to explore genomic science and its impact on people. Connecting Science inspires new thinking, sparks conversation, supports learning and measures attitudes, drawing on the ground-breaking research taking place on the Wellcome Genome Campus.
The Wellcome Sanger Institute is a world leading genomics research centre. We undertake large-scale research that forms the foundations of knowledge in biology and medicine. We are open and collaborative; our data, results, tools and technologies are shared across the globe to advance science. Our ambition is vast – we take on projects that are not possible anywhere else. We use the power of genome sequencing to understand and harness the information in DNA. Funded by Wellcome, we have the freedom and support to push the boundaries of genomics. Our findings are used to improve health and to understand life on Earth. Find out more at www.sanger.ac.uk or follow us on Twitter, Facebook, LinkedIn and on our Blog.
Wellcome exists to improve health by helping great ideas to thrive. We support researchers, we take on big health challenges, we campaign for better science, and we help everyone get involved with science and health research. We are a politically and financially independent foundation.
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