October 02, 2018 Feature

Precision Medicine and the Risk to Privacy

By Mark A. Rothstein

Precision medicine promises to integrate genetic analysis information with electronic health records (EHRs), readings from mobile health apps, as well as other diverse data sources, and then use big data analytics to produce individually tailored medical care.1 In theory, individually designed measures will greatly improve individual risk assessment, disease prevention, disease surveillance, diagnostics, and therapeutics. This new approach to medicine, however, raises many concerns, including whether it will be valuable beyond oncology and rare disorders and whether there will be equitable access to these more costly technologies, including pharmacogenomics-derived therapies, at a time when tens of millions of Americans still lack access to basic health care.2 A somewhat less explored, but equally significant, concern is that precision medicine, by collecting, aggregating, storing, and using unprecedented amounts of sensitive health data, creates serious risks to privacy for which there are presently inadequate legal protections.

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