Most Americans willing to sell genetic data
More than half of Americans are willing to provide genetic data only if they are financially compensated, according to a survey by researchers at Cornell University and Penn State.
The study, whose results appear today in PLOS ONE, involved 2,020 participants representing the US population. The survey was based on detailed field interviews with employees and officials involved in genomic governance at 12 different organizations.
Forrest Briscoe, professor of management and organization, Penn State, said, “As human genomic data collection rises, the organizations responsible for managing these data are developing and refining their internal policies and protocols related to data end uses, transparency and security, for example.”
He added, “In a survey of more than 2,000 people, 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.”
Participants were asked how willing would they be to provide their DNA data to Genetic Data Inc., a US-based for-profit technology company (but the participants weren’t told it was a fictitious company), for a biomedical research program?
The 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.”
More than half – 50.6% – said they were willing to provide it if paid for it, 37.8% said they were unwilling regardless of payment and 11.7% said they were willing to donate their genetic data.
Those willing to sell their data were asked how much they would expect to be compensated and all were asked how much they would pay Genetic Data Inc. to get a report with information on their ancestry and forecasting their risk for 20 different genetically based health conditions.
For those who wanted to be paid for their data, the median net expected payment was $+95, while for those who were willing to donate the data, the median net expected payment, after deducting the amount they were willing to pay for the report, was -$75.
Briscoe said, “Our results suggest that as public awareness grows regarding the commercial aspects and privacy issues of genomic databases, individuals’ expectations for compensation in exchange for data provision may rise.”
Image credit - NHS National Genetics and Genomics Education Centre (CC BY 2.0)
