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In Survey, Half Say They Want to be Paid for Providing Their Own Genomic Data

NEW YORK – About half of individuals participating in a new survey said they would be willing to provide their genomic data to a database if they were financially compensated for doing so.

Previous surveys investigating the public's attitudes toward genomic databases have focused on academic biobanks and found a high willingness to contribute. But researchers from Pennsylvania State University and Cornell University wondered how recent developments, like increasing numbers of non-academic genomic databases and privacy concerns, might color peoples' views of providing genetic data to such resources.

Penn State's Forrest Briscoe and his colleagues surveyed more than 2,000 US adults about whether they would be willing to provide their DNA to different types of organizations. About 50 percent of respondents said they would provide their data only if they were paid. Certain policies governing the databases — such as the ability to request that their data be deleted or assurances their data would not be sold or shared — also swayed people's willingness to contribute.

"We found that the majority of respondents clearly prefer a more transparent and participant-centric governance approach that gives them more control, confidence, and compensation," Briscoe said in a statement.

Their findings were published Wednesday in PLOS One.

Survey participants were first shown a three-minute informational video about genomic databases that described the increasing commercial value of genetic information and emerging privacy concerns. The 2,020 participants were then randomly assigned to be asked about providing genetic data to a specific organization type: a technology company, a drug company, a hospital, a university, or a federal research agency. 

Overall, 11.7 percent were willing to contribute their data for free, but 50.6 percent said they would provide it if they were compensated and 37.8 percent said they would not provide their data even if compensated. These numbers were largely similar when broken down by the type of organization requesting the information, though the percentage of respondents willing to donate to a hospital, university, or government agency was slightly higher than for the tech and pharma companies.

This, the researchers noted, differs from previous studies focused on academic genomic banks, which reported that about half of people were willing to donate their genetic material.

Those who said they wanted compensation in return for their DNA said they expected to be paid a median $130. If offered a personalized genomic report in return for their data, respondents who were "sellers" still expected to be compensated about $95, while respondents who were "donors" expected to pay about $75.

How the companies or institutions said they would handle genomic data also influenced respondents' willingness to provide it. Three factors — the ability to request data deletion, assurances that data would not be shared or sold, and guarantees that re-using data needed specific permission — increased people's willingness to provide their data. Three other factors — selling database access to drug companies, providing data to the federal government, and keeping data indefinitely — decreased that willingness.

"A common denominator across our governance policy findings is a preference for restrictions on sharing or reuse, unless permission is specifically granted by the individual," Briscoe said. "These preferences appear to pose a challenge for the goals and business models of many commercial and public database-owning organizations, which often envision that their databases will serve multiple scientific and commercial purposes through access arrangements with multiple outside partners."

He and his colleagues noted, though, that technological solutions are being sought to make it easier for research participants to retain greater control over who uses their data and for what purpose while also providing researchers the level of data sharing they need.

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