More than half of Americans want money, control in exchange for genetic data
People’s expectations for compensation and control may increase as they become more aware of privacy concerns and the ways in which genomic database companies are profiting from their data, according to researchers at Penn State and Cornell University. This research was partially supported by Penn State Clinical and Translational Science Institute through support of Jennifer McCormick, ethics lead in the institute’s Research Methods Core.
“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,” said Forrest Briscoe, professor of management and organization, Penn State. “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.”
The researchers created a survey based on in-depth field interviews with officials and employees who were involved in genomic governance at 12 different organizations. They recruited 2,020 participants — representative of the U.S. population —and provided them with mainstream media coverage of genomic database companies. Researchers published their results in PLOS ONE.