Is the bloom off the consumer DNA business? It’s past time for a Genomic Bill of Rights. (updated)

Perhaps a bit of sanity enters. Ancestry, the largest vendor of home-based tests for genetic testing to trace ancestry and seek health information, announced layoffs of 6 percent, or about 100 people, from its Utah and California offices. This follows on post-New Year layoffs at chief rival 23andMe of 14 percent of its staff, also about 100 people.

The slowdown in the consumer appeal of genetic testing is apparently across the board. While one hears of genetic tests being given for holidays and birthdays, there is little repeat need. The market was easily saturated: the early adopters have done their testing; the second wave of consumers which normalize a technology now are increasingly aware of and have privacy concerns about their genetic information being misused. This Editor would add a lingering wave of silly TV and online commercials with wide-eyed folks imagining their connection to ancient royalty or swapping out lederhosen for kilts after their testing report comes back. 

The bright spot for both companies is where they were really heading–healthcare data. AncestryHealth is not being cut back. As previously noted, GSK owns half of 23andme.

This Editor in 2018 advocated a Genomic Bill of Rights where before testing, a genetics testing client would be told how their genomic data is being used and being protected, informed about de-identification, and easily able to opt-out of commercial use. And the revelations about matching to others in the database or health revelations should be done not only with circumspection and respect for the disruption which may happen in the client’s life, but also held to the highest standard of testing. Sometimes that discovery is the equivalent of tossing a hand grenade into a person’s life. There also hasn’t been a lot said about making de-identifiable data identifiable through the ‘nefarious use’ of genomic data sets available through research networks.

DNA is being used for so much advanced medicine and even home testing (example–Cologuard in the US for colon cancer). It’s regrettable that the most public face of genetic testing rests with two companies whose main sell on your past and health has had unintended consequences, and whose main chance lies in the sale of their consumer data. The Verge, CNBC

Categories: Latest News, Opinion, and Soapbox.

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