I’m sitting in the Vancouver airport winging home from TED 2014. It’s still going on, but I only had a day pass for yesterday as we gathered DNA samples for the soft launch of the Resilience Project (a collaboration between Sage Bionetoworks and Mount Sinai).
I don’t often take DNA swabs, but when I do, I kneel on the floor and furiously barcode TED attendees DNA swabs. Elissa Levin, Stephen Friend, Lesa Mitchell, Diana Friend. Not pictured: Linda Avey, who was on the floor with me.
Thanks, TED (and especially Priscilla, the ever-gracious speaker concierge) for letting us launch our project!
As we were decompressing, Charlie Rose started interviewing Larry Page. It was a very wide-ranging interview, but the part that stuck out to me was Page’s desire to have a massive pool of medical records available for research purposes.
This is obviously near and dear to my heart, and to many others. TechCrunch picked up on it and was gracious enough to quote me in their coverage.
But it was the phrasing that stuck like a splinter in my brain. At no point was this mass of records about the people referenced by those records. It was as if the data had no relation to the people other than as grist for a vast mill, something to be turned into insights that only then would help people. There was a desire for total disconnect between the medical records and the very real, very human beings whose cholesterol and hemorrhoids were described therein.
This is often done in the name of protecting the privacy of those people. But as we’ve seen, anonymization of records doesn’t mean the records are anonymous in the hands of skilled attackers.
I think the real reason is that it’s just easier. It solves for the privacy laws, if not the privacy problems, and it lets those analyzing the data treat it as an economic and computational resource without moral dimensions. I don’t blame a company for taking that stance. It’s easier.
Easier isn’t always the answer. My own TED talk, from 2012, was about looking into the mirror and making informed consent the centerpiece of pooling medical data.
We can do this. It’s what underpinned the first version of the Portable Legal Consent study. It’s underpinning the Resilience Project. It’s underpinning the Bridge platform at Sage.
But it won’t happen - we won’t do it - if fall into the trap of thinking about “50,000,000 anonymized records.”
One medical record is a person. 50 million is a statistic. It’s a lot easier to toss moral and ethical concerns away when the numbers get big. But no matter how many records we have, each one came from a person. And she deserves a voice, a consent, an engagement, with the research she empowers.