The (New) Ethics of Medical Privacy

I recently had the opportunity to attend a screening of Here.Us.Now., a documentary funded by the Ewing Marion Kauffman Foundation. It should be required viewing for anyone who touches the health care system, which includes pretty much everyone. The film tells the story of Chris and Hugh Hempel’s medical odyssey in the wake of their twin daughters’ diagnosis with a rare, incurable disease called Niemann-Pick Type C. I can’t get this film out of my head.

Addi and Cassi Hempel


Why? Because it not only tells the Hempels’ story rationally and beautifully, it uses their narrative to absolutely nail the bigger issues facing any family desperately waiting for innovation to save a loved one. Many of these issues seem far removed from the patient (e.g., how medical research is incented, the cumbersome drug approval process, etc.). One in particular, however, hits very close to home: medical privacy. On this issue, we need a completely different perspective and policy framework.

The Hempels chose not to wait for miracles, took matters into their own hands, and stumbled into and through many obstacles that hold back innovation in today’s market. Along the way they learned that one major hurdle was the unintended result of a policy originally put in place to protect patients, called HIPAA (Heath Insurance Portability and Accountability Act).

HIPAA was enacted in 1996 to assure patients’ medical records would be kept private and not used to their detriment. It’s hard to argue with that. But in today’s world–where patient data is increasingly critical to informing both care and medical research–even those who want to share their medical information to benefit themselves or others are held back by outdated policy and perceptions.

We need a new approach. We need to give patients the opportunity, in large numbers (or, better yet, universally), to waive certain protections of HIPAA and liberate their data to fuel research and breakthroughs in treatment. We’ve set up a national “do not call” list to protect people from getting solicitation calls. Why not set up a national permission system to allow patients to easily opt in to allow their health care providers to share data that may be helpful in supporting their own care, or research that could benefit many others?

In the same way that there is an ethical justification to assure medical information isn’t used to discriminate or harm individuals, I’m convinced there is now an ethical imperative to allow information to be voluntarily shared that could benefit both the individual and entire populations of patients.

By not doing so, we delay discoveries and treatments that could save countless lives and relieve tremendous suffering.