Patients More Willing to Undergo Genetic Testing if Given Control of Their Data

Less than 1% of the United States population has had genetic testing done in a formalized hospital setting. But because genetic understanding has ballooned and the cost of the science has continued to fall, that number seems poised to increase. By how much, however, may depend on how much control patients have over their genetic data.

A new study conducted by Massachusetts Institute of Technology (MIT) professor Catherine Tucker and University of Virginia economist Amalia R. Miller found wide variation in patient willingness to submit to genetic testing, dependent on different privacy laws in given states.

Their work identified 3 varieties of state-level privacy and consent policies for genetic tests: those solely focused on consent to potential privacy risks, those ensuring greater patient control on genetic data, and those that guaranteed the genetic data would not be used by “insurers, employers, or other providers of long-term care and insurance.”

“An approach where you gave various guarantees about how the data would be used…actually had no effect,” Tucker said, according to MIT’s official release.

There was a substantial difference, however, between mere consent and emphasis of patient data control: policies that emphasized patient control raised testing incidence by 83%, while policies that notified patients of the risks of genetic data without ensuring such control lowered incidence by 69%.

Data for the study came from the Centers for Disease Control and Prevention’s National Health Interview Surveys. In all, it contained over 80,000 responses. Their work only applied to testing “in research hospitals on the forefront of medicine,” however, and can only apply to the types of patients who go to them.

“There’s a whole other frontier out there of private testing companies,” Tucker, a professor at the MIT’s Sloan School of Management, said. It’s unknown how the perceived informality of direct-to-consumer DNA testing companies (and the perceived formality of research hospitals) would impact a patient’s judgment about their genetic data. It’s important, she said, to continue monitoring testing consent trends as the field evolves.

That “whole other frontier” is currently enjoying a strong holiday sales push. On Black Friday, 23andMe’s testing services were one of the 5 best-selling items among the half-billion plus for sale on Amazon. Not long after the company posted those impressive numbers, Senator Charles Schumer (D-NY) held a press conference to call for increased scrutiny on the direct-to-consumer genetics industry.

“What those companies can do with all that data—your most sensitive and deepest info, your genetics—is not clear, and in some cases, not fair and not right,” he said.