NEW YORK – Most people who responded to a recent large, international survey said they were either unwilling or unsure about donating their DNA for research.
Large genetic and genomic studies rely on the public to participate by donating DNA and related data, and understanding what influences participation can help bolster numbers, a team led by researchers at the Wellcome Sanger Institute noted. Through the "Your DNA, Your Say" survey, they asked more than 36,000 people from 22 countries about their attitude toward genomic research and data sharing. As they reported on Thursday in the American Journal of Human Genetics, the researchers found that whether people were willing to donate their de-identified DNA and health data depended in part on their familiarity with the field and who would be using the information.
"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," first author Anna Middleton, head of the society and ethics research group in the Wellcome Genome Campus' Connecting Science program, said in a statement. "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."
She and her colleagues surveyed 36,268 people living in 22 countries, mostly in Europe, Asia, and North and South America, and speaking 15 different languages to inquire about their willingness to donate de-identified DNA and health information. In their 29-question survey, they additionally asked about participants' familiarity with genetics and genomics, their thoughts on genetic exceptionalism, and their trust in different types of organizations or individuals that might be collecting the data.
Overall, most participants were unwilling or unsure about donating their DNA and medical data for research, but that willingness varied by familiarity with genetics and whether a medical doctor or a for-profit company were collecting the data.
Most participants, 64.2 percent, said they were not familiar with the concepts of DNA, genetics, or genomes. But individuals who were familiar with genetics or had personal experience or a family history of genetic disease were more likely to be willing to donate their data.
Trust also played a key role in participants' willingness to donate DNA and data. In general, slightly more than half the respondents said they would be willing to donate DNA to a medical doctor, but only about a third said they would donate it for use by for-profit companies. Respondents were also generally wary of sharing their data with multiple actors.
This willingness varied by country, the researchers noted. Less than 30 percent of respondents from Egypt, Germany, Poland, and Russia said they were willing to donate if there were multiple users. But more than half of the respondents in China, India, Pakistan, and the UK trusted multiple users. This divergence, they noted, could be influenced by differences in how research and healthcare is approached in various regions.
The findings suggested to the researchers that there needs to be a focus on familiarizing the public with genomic research and its goals as well as on the importance of collaborative genomic research that includes both non-profit and for-profit entities.
"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," co-author Richard Milne, also from Connecting Science's society and ethics research group, said in a statement. "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."