What Matters to People Today in Keeping Health Information Private?

There is no question today that more and more people are willing to share their personal intimate information on social media and do everyday. I think we need to have a fresh approach and new thinking about what really matters to us in privacy. Is it the fact that information about us might be usable and used by others, or is it the relatedness of that information to ourselves and our personal lives.

If we could provide information in an anonymous way, if our data could be utilized in studies and still not link back to us, would that not provide adequate protections of privacy? And even if some data and some unscrupulous characters could try to identify and link data to an individual, could not laws severely punish and inhibit the inappropriate use of any information about another individual regardless of how well protected we actually think it is today.

I believe that the opportunities to learn more and to be more quickly providing new ways of preventing and treating disease by making much more information accessible is going to prove to be a very strong appeal not just to scientists and researchers but to the broader public.

A majority of people in surveys say that they are willing to share their information if it will help science and improve the care of themselves and others. I think we're going to see ways of accomplishing that, that still protects the essential privacy interests of each individual.