Sharing Health Data Online; New York Times, 2/16/16

[Letter to the Editor] Julia Brody, New York Times; Sharing Health Data Online:

"Doctors and scientists have an ethical duty to explain to patients the implications of online data sharing, and to explain them well. In our recent study, we interviewed participants in the Personal Genome Project and found that when researchers are completely open about the risks and benefits of making their genetic and health data public, participants were often willing to consent because they wanted to help advance science.

It is up to scientists, then, to make good on their promise to accelerate discovery in the treatment and prevention of diseases, by ensuring that patient data is properly stored and managed so that other researchers can use it.

At the same time, more needs to be done to minimize the risks, like privacy violations, through better data security and legal protections for study participants.

JULIA BRODY"