Jochen Tack / Alamy
As consumer genetic testing has risen in popularity, awareness of the value of genetic data has lagged behind. A survey of people in the US has found that 50 per cent would hand over their genetic data for $ 95 (£70), on average.
Forrest Briscoe at Pennsylvania State University and his colleagues surveyed more than 2000 people about the use of genetic data, which can be stored in databases for police use, at direct-to-consumer genetic test firms, and for medical research.
“I really felt like we needed updated information about how the public views these databases,” says Briscoe. “They are growing quickly, in number and size, but the information being used to inform design and governance is outdated.”
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The participants, a representative sample of the US population, watched a 3-minute video detailing both the commercial value of genomic data and genetic privacy issues. This included a statement that consumer genetic testing firm 23andMe sells access to its database to pharmaceutical firms for $ 140 per individual’s data.
The participants were then split into five groups and asked whether they would grant access to their genetic data – either as a donation or in exchange for money – to one of five types of organisation: a non-profit hospital, a pharmaceutical company, a tech firm, a university research lab and a US federal research agency.
While 38 per cent said they wouldn’t share their data, 50 per cent said they would if they were paid, and 12 per cent said they would do it for free.
The type of organisation that would use their data didn’t affect willingness to share. “That was a surprise,” says Briscoe. “We think this makes the case for a common governance framework for DNA databases, whoever they are owned by.”
Those who said they wanted to be paid, expected a median of $ 130, but said they would accept $ 95 if they also received a health and ancestry report based on their genetic data. People who said they would give their data away said they would pay an average of $ 75 for such a report.
“These results demonstrate the growing interest in maintaining a degree of control over personal information,” says Tim Caulfield at the University of Alberta, Canada. “The public has been told for decades that this research is essential and valuable and potentially profitable. They may be thinking, ‘Okay, I believe you. Pay me.’”
Journal reference: PLoS One, DOI: 10.1371/journal.pone.0229044
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