The University of Houston's Barbara Evans argues in a commentary appearing in the American Journal of Human Genetics that there are ways to both protect a person's right to access their genomic data as well as address safety risks.
Regulations in the US have set up two opposing forces surrounding genetic testing, she writes. A 2014 amendment to the Health Insurance Portability and Accountability Act of 1996 (HIPAA) privacy rule gave people the right to access lab test results, including the results of genetic tests, she says. This, Evans adds, means that some research labs might have to comply with requests for results. At the same time, she notes that other agencies like the Food and Drug Administration and the Centers for Medicare and Medicaid Services have implemented policies to limit people's access because of concerns that research data could be misused or misinterpreted.
There are, Evans says, ways to balance the two issues. For instance, she says safety regulators could issue warnings and disclosure statements, and adds that reliability scores could be developed for groups that interpret genomic data. She also says that Congress should consider providing funds to research labs to enable them to provide data access after their grants end.
"The good news is that we aren't forced to choose between having safety or having civil rights," Evans adds in a statement. "We can have both, but it requires regulators to be smart and think outside their usual boxes."