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Your Genome Will See You Now: The NHS care.data and ‘genomic privacy’

    

A couple weeks ago, we at Duke Science & Society had a great discussion during our journal club (open to the public!) about Vanderbilt Hospital’s opt-out-only policy on sequencing genetic samples from patients in the hospital and using the resulting database for research (You can read the abstract of the paper we were discussing here). The consensus of the group seemed to be that the procedures Vanderbilt had put in place made it disingenuous to assure patients that the resulting database was ‘anonymous’: it has been demonstrated that people can be re-identified based on a genetic sample, and this process would be even easier if all your samples come from a fixed environment. “Gee, this sample is from a girl treated in the CF unit of our hospital on March 21.” That’s about 5 people. The conclusion of the group, however, wasn’t that Vanderbilt needed to do a better job protecting privacy (as Misha Angrist has pointed out, our understanding of genetic privacy is stuck in the 20th century) but that they should just be honest about it. And, more importantly, they had missed a chance to be at the vanguard of the next step in health care. Why not make the data identifiable, and while you’re at it, link it to my health record and tell me if you find anything interesting.

So it interesting to read about the current push by the UK’s National Health Service (NHS) to not only shift to an entirely digital health record system but to attach genomic data and make the results available to both physicians and patients.  On top of that, a second ‘de-identified’ record will be created from each member of the database and entered into a giant research database that can be used by public health researchers and scientists. Of course, you can opt out just by telling your GP you want to opt out (if you do it by March). And although the government has promised that the kinds of information shared and the uses to which the information is put will be subject to a ‘democratic’ process, there are already some doubts about how democratic the whole thing actually was. Nevertheless, it’s an intriguing step towards a different understanding of why we are clinging to a notion of ‘privacy’ that may no longer be relevant. Is it time to step up and let our genomes work for us and for research in general?

Of course, it’s also a public and social policy nightmare and I’m incredibly glad that I am not in charge of designing the anti-genetic-discrimination, anti-commercial-exploitation and anti-overselling-of-the-benefits-of-accessing-your-genomic-information of it all. Someone’s going to have a mess on their hands.