Leading Consumer Genomics Companies Promise To Push Back Against Third-Party Requests For Consumer Records (guest post by Ryan Calo, CIS)

I learned something very interesting in preparing for a panel (PDF) on consumer genomics sponsored by the Center for Law and the Biosciences (and co-sponsored by the Center for Internet and Society). It turns out that at least one industry leader – Navigenics – has committed in writing to resisting court orders, subpoenas, and other requests for information about their customers. Specifically, Navigenics promises in its privacy policy that the company “will use reasonable and lawful efforts to limit the scope of any such legally required disclosure.”

This language might appear soft at first blush. After all, Navigenics will presumably determine for itself what “reasonable” efforts might be. But it is actually very rare for a company to commit in advance to pushing back in any way against legal requests for records. Look around: you will not see (m)any privacy policies elaborating on the standard formulation of “we will comply with lawful requests.” I would wager that there was serious deliberation among the lawyers before including this language, which obligates Navigenics to look closely at incoming requests and resist process in at least some instances.

The underlying issue of whether civil litigants or the U.S. (or a foreign) government might access consumer genetic profiles through legal process is a salient one. As Stanford Law professor (and panel moderator) Hank Greely pointed out, law enforcement has already begun to track down suspects through relatives. 23andMe co-founder Anne Wojcicki and Navigenics general counsel Stephen Moore – along with Wired journalist Alexis Madrigal, the three panelists – indicated that they were still too small at this stage to receive many subpoenas. But they acknowledged the possibility of future third-party legal requests.

I complimented Moore on Navigenics’ commitment to try to limit the scope of lawful requests for consumer information and asked Wojcicki why 23andMe – whose privacy policy is similar to that of Navigenics in most other respects – didn’t do the same. To her serious credit, Wojcicki responded by affirming the primacy of customer privacy and opining that a company should be willing to “go bankrupt” defending unreasonable subpoenas. This is one of the strongest statements I’ve heard regarding customer rights since Digg founder Kevin Ross’ vowed that Digg would “go down fighting [rather] than bow down to a bigger company.” (Ross added: “If we lose, then what the hell, at least we died trying.”)

You will eventually be able to hear a recording of the entire consumer genomics panel here.

— Ryan Calo