Surveys show that up to 80% of Americans would like to contribute their health information for scientific studies to improve human health, but very few people do it. Professor Barbara Evans conducts research in this area and has analyzed the problem.
“Health information is the fuel for 21st century medical discovery,” Professor Evans said. “But people worry about privacy and they want a say in how their most personal health information can be used. The federal privacy protections were designed by ethicists and regulators. They meant well but the standards apparently are not what people want.”
Professor Evans has been collaborating with researchers to make changes.
“We’re working to set up people-powered data collaboratives. These are groups of regular people who work together to put their health records into big datasets for research. The people will vote on what types of research they are willing to allow and the privacy protections they expect. This is the face of 21st century bioethics helping people protect themselves through collective bargaining.”