Both Gostin and Erlich agree the most realistic and pragmatic course of action to take is telling people of the upfront privacy risks so they can make an informed decision on whether or not to participate.
“If privacy can’t be guaranteed, then the focus should be shifted to mitigating data misusage,” says Jeffrey Kahn, professor of bioethics and public policy at Johns Hopkins Berman Institute of Bioethics. Kahn says that the U.S Department of Health and Human Services should tighten its regulations on sharing data from human subject research. Currently, federal protections apply only to research funded by a select number of federal agencies. Kahn says this means a person or company could potentially exploit someone’s genetic information in certain online sequencing databases without fear of legal repercussions.
The proposed changes would put in place protections for all federally supported human research projects and make it easier to track instances of misuse. “All genetic information is inherently identifiable,” he says. “But that doesn’t mean there shouldn’t be consequences for people and companies that put it to misuse.”