People want more money, control in exchange for genomic data

Genomic data donated by the public is valuable for the companies that collect it. But a recent survey finds that once people are aware of issues surrounding the use and security of genetic information, people are more concerned about how it might be used and expect to be better compensated for providing it.

Research co-authored by Ifeoma Ajunwa, assistant professor of labor relations, law and history at Cornell University, details the results of the first nationally representative survey to consider DNA collection from both nonprofit and for-profit settings.

Ajunwa and Forrest Briscoe, professor of management and organization at Pennsylvania State University, co-authored "Evolving Public Views on the Value of One's DNA and Expectations for Genomic Database Governance: Results from a National Survey," published March 11 in PLOS One.

A common theme in our findings is how people value control. They are more willing to provide data if they are told they will be able to select how it's used in the future - and if they can have it removed from the database later on. What they don't want is total loss of control once it's out there."

Forrest Briscoe, professor of management and organization at Pennsylvania State University

In their study, the authors provided 2,020 survey respondents with a three-minute video created from mainstream media coverage of genomic databases. Then they asked a series of questions about how governance policies - the ways data held by these companies is secured, used and regulated - would impact the respondents' willingness to provide data, as well as the payment they expect to receive.

After watching the video, nearly 12% of respondents said they would provide their data for free; more than 50% said they would provide it if compensated with payment and nearly 39% said they wouldn't provide it even if payment was available. This contrasted with results reported by academic research biobanks, which find consistently higher rates of willingness to donate DNA.

When people were more informed, they were a lot more interested in requiring greater security for their data, and they were a little bit more hesitant to give it up."  

Ifeoma Ajunwa, assistant professor of labor relations, law and history at Cornell University

The survey also asked how 12 specific policies would affect respondents' willingness to provide genomic data. The three policies that made them most likely to provide it were: the ability to request their data be deleted; assurance that their data wouldn't be sold or shared; and requiring specific permissions to reuse the data.

They were least likely to want to provide their data if the company sold access to pharmaceutical firms, provided data to the federal government or retained the data indefinitely.

"People need to know the full worth of their genetic data in order to make an informed consent," Ajunwa said. "How much is the data worth, what kinds of safeguarding are necessary, is it OK to have something in digital form and therefore more vulnerable? There are all of these outstanding questions to be answered."