The New York Times - Sharing Health Data Online

February 16, 2016

Letter to the Editor

By Julia Brody

In “Use Your Data to Cure Disease” (Sunday Review, Feb. 7), David B. Agus states that more breakthroughs in medical research would be possible if patients weren’t so afraid of having their health data made available to other researchers. But the onus should not be on the public to overcome its fears.

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.

Data Sharing and Privacy Protection