The largest-ever international survey on genomics found that less than half of those surveyed would share their DNA for research and medical purposes, citing trust as a major factor in their decision. The survey results, published in American Journal of Human Genetics, highlight how distrustful the public is of genomic and DNA research—something that could greatly hinder broad-based research dependent on genetic data, including forensic applications and databases.
The “Your DNA, Your Say” survey was completed by 36,268 members of the public across 22 countries and in 15 languages. Overall, the survey found willingness to donate one’s DNA and health data for research is relatively low, and trust in the process of data being shared with multiple users—such as doctors, researchers and governments—is also low.
It’s important to note, throughout the survey, the researchers specified that DNA donation would be anonymous, meaning personal information such as name and date of birth would not be shared. However, the researchers, associated with the Society and Ethics Research Group within Connecting Science, were quick to acknowledge the fact that DNA can never truly be anonymous given its unique ability to identify a single person.
Participants (52%) were most willing to donate DNA and medical information for use by medical doctors. Conversely, they were significantly less willing to donate when the recipient was a for-profit researcher.
“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,” said Connecting Science’s Richard Milne, a co-author of the study.
Additionally, less than half the overall sample (42%) reported trusting multiple users with their DNA or health information. There was, however, substantial variation between countries in terms of trust: more than 50% of participants in China, India, the United Kingdom, and Pakistan trusted more than one entity, compared with fewer than 30% of participants in Egypt, Russia, Germany and Poland.
Familiarity with DNA, genetics and genomics also varied across countries, but the majority of participants (64%) said they were unfamiliar. Japan had the highest percentage of participants unfamiliar with genetics at 88%, while Italy and the United States had the lowest at about 40%. Likewise, Italy and the U.S. had the highest rate of familiarity with genetic research at about 38%.
“The survey highlights that the research community not only needs to be worthy of trust by the public, but also urgent steps need to be taken to authentically communicate why genomic research is necessary and how data donation, and subsequent sharing, is integral to this,” the study authors conclude.
Anna Middleton, Head of Society and Ethics Research in Connecting Science at the Wellcome Genome Campus and lead author of the study, wants to make sure the research community takes the results of this survey 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,” she said. “A loss of 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.”
Photo credit: Global Alliance for Genomics & Health