In a recent article posted on Bloomberg Law, John Wilbanks, chief commons officer at Sage Bionetworks, commented:
“People don’t trust tech right now…the idea that we’re suddenly going to trust them with all of our DNA, that’s going got be a tough sell.”
Wilbanks was speaking on the panel Using Patient Data in Research: Balancing Benefits and Risks during the Milken Institute’s Future of Health Summit 2019. The panel focused on the following topics:
We are capturing, tracking, and creating more data than ever about our lifestyle and health. More and more companies hold our data, which we sign away by indicating that we’ve read extensive privacy policies, when few of us actually have. And there are major gaps, loopholes, and complexities in the regulations that protect our data. Yet, when put to good use, these masses of data might help us manage our health, help providers understand the patient experience, and help researchers glean new insights about disease and biology. What risks exist when companies carry so much consumer data? How can good practice and regulations mitigate these risks? Our panel of experts will discuss these issues and lead a conversation about how we can shift towards an environment where health data is used to empower patients, while also being used to glean new insights for research and move the field forward.