The levels of public trust in how genomic data is used and shared needs to increase among the general population, if this information is to fulfill its promise of improving overall health and the delivery of healthcare, according to new research from Society and Ethics Research group at Connecting Science.
The study, published today in the American Journal of Human Genetics and details the extent to which the public are both unfamiliar with, and unwilling to participate in, genomic research.
“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,” said Dr. Richard Milne of Connecting Science and an author of the study. “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.”
Perhaps the most telling finding of the research is that roughly two-of-three people who responded to the survey said they unfamiliar with DNA, genetics, and genomics. And while 52% of those surveyed said they would anonymously donate DNA and other medical information for use by doctors, that number drops to abut 33% who would allow this information to be used by for-profit enterprises. Sharing of this data was also seen as problematic by most survey respondents with only 42% saying they would agree to have their genomic and other medical data share by at least two organizations.
“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” said lead author of the study and Anna Middleton, head of Society and Ethics Research in Connecting Science. “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.”
Collaborators around the world helped distribute the survey, called ‘Your DNA, Your Say.’ The effort generated responses from 36,268 members of the public from 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.
Due to its global reach, the survey revealed some regional and culture idiosyncrasies. For instance, fewer than 30% of respondents from Germany, Poland, Russia and Egypt said they trusted more than one user of their data; while more than half of the respondents from China, the U.K., India, and Pakistan would trusted more than one user. 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 organizations.
Peter Goodhand, GA4GH CEO noted: “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 anonymized 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.”
