People want more compensation, security for genomic data

Genomic data is valuable for the companies that collect it. But what is it worth to the people who donate it?

Once they’re 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, according to a new survey co-directed by a Cornell researcher.

“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,” said Ifeoma Ajunwa, assistant professor of labor relations, law and history in the ILR School. “Before we even ask the question of how much people should be paid for their data, we need to make sure they truly understand what the data means and how much it might be worth.”

Ajunwa co-authored “Evolving Public Views on the Value of One’s DNA and Expectations for Genomic Database Governance: Results from a National Survey,” which published March 11 in PLOS One. In the paper, the authors detailed the results of the first nationally representative survey to consider DNA collection from both nonprofit and for-profit settings. The survey was conducted in November and December 2018 and completed by 2,020 people in the United States.

“A common theme in our findings is how people value control,” said Forrest Briscoe, professor of management and organization at Pennsylvania State University’s Smeal College of Business and the paper’s first author. “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.”

DNA is collected by hospitals and academic research institutions for the purposes of research; it’s also collected by for-profit companies, such as 23andMe. Few rules exist regulating the sharing, securing and use of this data – which can reveal private information such as propensity for disease, health risks and lifestyle, about not only the donors but also their relatives.

“Genetic data is deeply personal but also quite communal,” Ajunwa said.

Some people donate their DNA altruistically – for free and in order to support research – often by checking a box on a form when they submit samples to private companies. Sometimes it’s collected in the context of a workplace wellness program, or as part of medical treatment.

But recent news stories – including GlaxoSmithKline’s $300 million stake in 23andMe, and Roche’s $1.9 billion acquisition of Flatiron Health, an electronic health software provider – underscore how valuable this data can be. At the same time, reports of police using genomic databases, as well as data breaches, are raising awareness about privacy and security risks.

In their study, the authors provided 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.

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.”

The paper was co-authored with Allison Gaddis and Jennifer McCormick, both of Penn State.

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Rebecca Valli