The thing about consumer privacy

In the wake of the Equifax data breach, the state of California quite reasonably got concerned about consumer privacy. And so it passed a bill that empowered Californians to find out what data companies had gathered about them and demand it be deleted if they so chose.

The problem is, that law doesn't explicitly exempt clinical trial data, and that has the powers that be in science and pharma frightened. What if patients who participate in a study prohibit researchers from using their data, delete it outright, or demand to know if they’re receiving an active treatment or a placebo?

And so there's another bill, now on the desk of Gov. Jerry Brown, that would carve out an exception for trials. If it doesn't get signed, advocates say, California could lose out on billions in research dollars.

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