(Reuters Health) - More than half of Americans want money and control when companies or organizations use their genetic data, a new study suggests.
Public views about the value of DNA continue to evolve, especially as people become more concerned about privacy, the study authors write in PLoS ONE.
“The public’s views need to be included in decision making about these databases,” said lead study author Forrest Briscoe of Pennsylvania State University in University Park.
“People are learning that these data have value and that they are being used commercially and monetized,” he told Reuters Health by email. “People may want to think more about the ‘terms of the exchange’ and about the ‘deal’ they are striking when they provide their data.”
Briscoe and colleagues surveyed more than 2,000 people after presenting a video of mainstream media coverage of genomic database companies. They asked survey participants to imagine being invited to provide a saliva sample to an organization to be used in a biomedical research program.
Then participants were asked: “Based on this information and what you have just learned about DNA data, how willing would you be to provide your DNA data?” The four options were “willing as a charitable donation,” “willing if I’m paid at least a certain amount of money,” “unwilling, at least for now” and “unwilling, now or ever.”
About 12% were willing to donate their data, 51% were willing to provide data if they were financially compensated, and 38% were unwilling to provide data. The average expected compensation was about $130, which mirrored the amount mentioned in the media coverage. Participants also preferred governance policies that restricted data sharing or reuse unless the individual gave permission.
These preferences didn’t vary much, whether the hypothetical organization was a for-profit technology corporation, a for-profit drug company, a non-profit hospital system, a university lab or the National Institutes of Health, the researchers found.
“In one sense, this lack of differentiating across organizations is surprising because we tend to assume people place greater trust in healthcare organizations and universities compared with companies,” Briscoe said. “But in another sense, the lack of differentiating across organizations may be wise. After all, DNA data generated in one organization can be sold, rented, or otherwise shared with other organizations.”
Briscoe and colleagues are now studying the decisions and governance policies of leading organizations with DNA databases. They want to help policymakers and organizations determine the best practices.
“It is striking how much control people want to have over where data about them go, when in reality, they have very little,” said Dr. Ellen Clayton of Vanderbilt University in Nashville, Tennessee, who wasn’t involved in the study.
“What is more, NIH has required broad consent for data sharing of genomic data with unknown investigators for not yet known projects for years and has proposed to require it for all data obtained with federal funding,” she told Reuters Health by email. “A lot of work needs to be done to develop governance strategies that people trust.”
The current results conflict with other surveys that show much higher percentages of people are willing to donate their data for altruistic reasons, said Dr. Kyle Brothers of the University of Louisville School of Medicine, in Kentucky, who wasn’t involved in the new research.
Future studies should investigate if people are willing to donate when approached by groups they trust and more hesitant if they have information about the commercial implications of donating, Brothers said.
“If you are thinking about using direct-to-consumer genetic testing companies (like 23andMe and Ancestry.com) to find out more about your DNA, you might want to dig deeper into how your genetic data might be used,” he told Reuters Health by email. “In many cases, it will be used for very positive purposes . . . but many companies also sell this data for commercial purposes.”
SOURCE: bit.ly/2Wb0rwl PLoS ONE, online March 10, 2020.