Anonymization of Health Data Offers Scant Protection of Identity

I have opined for more than a decade that it's not worth worrying too much about unauthorized access to your personal health and research data because"that horse has already left the barn" (see:On the Privacy of Health Information: The Horse Is Already Out of the Barn). The security of anonymized health data was discussed in a recent blog note in a Q and A with Hank Greely, a Stanford law professor who focuses on the ethics behind new technologies related to neuroscience and genetics (see:Genetic Testing: Who Owns Your Data?). This site is calledBeing Patient. Below is the excerpt from the article:Being Patient:Can we assume that...[personal health] data is anonymized, even if they ’re sharing it? Typically, 23andMe sends people emails after completing genetic testing, asking whether they can use the data for the “advancement of science.” Will the data be anonymized as long as people don’t tick “yes” when receiving these emails?Hank Greely: Yes and no. It will technically be anonymized. They say, and I believe them, that they won ’t share your name, social security number, Visa number, address or email address.The problem is, particularly with genetic information, de-identification is a myth in that with any sufficiently robust dataset, if somebody really cared, they could go back and re-identify you. The more data is out there in terms of genetic data, the easier that becomes. But, even if it ’s not genetic data, even if all th...
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