The private equity firm Blackstone now owns the DNA data of 18 million people, following the $4.7 billion acquisition of Ancestry. Matthew Ponsford explores what this means and how they might use it.
Among primary findings:
(1) Establishing the surprising ways in which investment firms could place value on an individual’s genomic data. This entailed speaking to CEOs and directors of leading startups. This was an effort to grow our understanding beyond quick surveys that have recently put the value that Americans put on their own DNA privacy (around $95) or back-of-a-packet calculations based on stock prices (around $261 per person). It showed that certain individuals predisposed to genetic disease could possess valuable insights that investment firms would want to discover, along with other ways that genetic databases are valued, when deals like this bring them together with other data.
(2) Only one single law applies to govern how Blackstone may use genetic data. The most obvious protection, the sweeping Health Insurance Portability and Accountability Act (HIPAA), does not apply to Blackstone because Blackstone is not a “covered entity” under HIPAA and neither is Ancestry, according to its privacy agreement. Nor does the Genetic Information Non-Discrimination Act (GINA), which applies to situations of employment, offer any privacy protections. The one law on the books that would seem to apply is Section 5 of the Federal Trade Commission (FTC) Act, which only stipulates that Blackstone would not be able to make “material, retroactive changes” to the privacy policy Ancestry users signed.
(3) Without legal restrictions on the use of genetic data, deals like Blackstone’s for Ancestry would make genetic data just one node in an “all-encompassing picture of consumer behavior” alongside data gleaned from other portfolio companies that Blackstone owns-insurance, healthcare, and retail companies among them. This would make it possible to, for example, highly effectively advertise health care products treating baldness, by targeting people who are genetically predisposed. Despite guarantees of privacy, the Blackstone-Ancestry deal leaves open the possibility of Ancestry itself splicing together its own data insights with external marketing data a whole new set of issues for genomics privacy.
(4) Through interviews with leading genetics companies and privacy advocates, the story established that not only do Wall Street firms aim to capture the value of our genome, but they could also rob the genomics industry of the chance to cultivate even more meaningful forms of genomic data that combines it with medical history and lifestyle data to drive untold future discoveries (new medicines and therapies, as well as insights that could drive forward medical science). One significant and justified fear is that a large firm could buy up a genomics startup to exploit its database solely to help another company-say, a retailer-it also owns. The original aims of the startup to improve healthcare or provide new insights from the genome could be sidelined or even dropped.