News roundup: Ancestry sells 75% to Blackstone, Cornwall NHS partners with Tunstall, most dangerous health IT trends, Slovenski departs from Walmart Health

Ancestry sells 75 percent of the genealogy/genetics company to Blackstone for $4.7 bn. The acquisition by the private equity company buys out other equity holders: Silver Lake, GIC, Spectrum Equity, Permira, and others. Ancestry’s business combines their genealogy database with consumer genomics for both heritage and health. The Blackstone release notes that their goals in the acquisition are to expand data, functionality, and product development across the Ancestry platform as part of their investment in growth businesses. If an acquisition cost of $4.7 bn seems high, Ancestry’s revenue is cited as $1 bn annually.

Once blazingly hot, both Ancestry and 23andMe saw their consumer businesses crater late last year, with layoffs in January and February. It’s an example of a quickly saturated market (one test and you’re done) flogged by annoying TV commercials over the holidays [TTA 13 Feb]. Where the profit is, of course, is not in consumer tests but in selling the genomic data to other companies, something which the market leader, 23andMe, realized early on with half-ownership by GSK ($300 million, a real bargain). 23andMe is also intensively marketing as a premium subscription service updates on health information derived from member testing. Ancestry has followed, but reportedly has not been as proactive in linking genetic information to health outcomes. STAT

 This Editor noted back in August 2018 that it was long past time for a Genomic Data Bill of Rights for consumers to be fully transparent on where their data is going, how it is being used, and to easily keep their data private without jumping through a ridiculous number of hoops. It’s a conclusion now being reached by various privacy groups according to MedCityNews. Also noted is that Ancestry, in its complex and long privacy policy, can use your “personal information to market new products from the company or its business partners, but says it will not share users’ genetic information with insurers, employers or third-party marketers without their express consent.” But when your 75 percent owner has real estate and other healthcare holdings, can you trust them?

Cornwall Partnership NHS Foundation Trust partnered with Tunstall Healthcare UK on a 26-week support program during the pandemic for young people 11+ with a range of eating disorders. The patient group used the myMobile app and the ICP triagemanager software to send in weekly reports on their vital signs and answer symptom-related questions, which are tracked over time via a secure portal to monitor progress. The myMobile app has parameters set for individual patients, where readings outside them generate a system alert that is sent to clinicians. The program was able to ascertain that 32 patients were at high risk and have been referred. Cornwall/Tunstall white paper,

As if COVID Fear weren’t bad enough, now we have to be frightened of Dangerous IT Trends. Becker’s Health IT interviewed eight healthcare executives and came up with a list of what keeps them up at night:

  • The sluggish rate at which healthcare systems embrace new technology
  • We won’t be going back to the pre-pandemic normal and how healthcare deals with that
  • Overlooking data security and medical device vulnerabilities
  • Cutting IT staff and budgets without acknowledging the consequences
  • The consequences of hastily moving workers remote and securing their devices

All of the above are not new, and it’s rather shocking that they haven’t been addressed.

And in Comings and Goings, we have a Notable Going. Sean Slovenski, who for the past two years has been heading up Walmart US’ Health and Wellness initiatives, departed the company last week with a replacement to be named in the coming weeks. Mr. Slovenski had been heading up a variety of healthcare initiatives, including in-store primary and dental care clinics which have opened up in four Arkansas and Georgia locations with an additional eight planned plus Florida. Walmart also opened up 100 COVID testing locations in store parking lots. His efforts were acknowledged in Walmart’s departure statement to staff. Mr. Slovenski “and his team have successfully stood up the strategy we hired him to create,” Walmart’s CEO John Furner said in a memo to staff. Walmart has also laid off over 1,000 corporate employees in a recent restructuring. Mr. Slovenski is most noted in digital health circles as CEO of Care Innovations for 2 1/2 years during the Intel-GE ownership. He was also with Healthways-ShareCare and Humana. Walmart is up against a long list of heavyweight challengers in retail health, including Amazon, CVS Aetna, and Walgreens–and may be deciding that an independent run is not worth it.

Soapbox: Big Genomics and DNA testing–why we need a Genomic Data Bill of Rights

[grow_thumb image=”” thumb_width=”150″ /]This week, consumer genomics testing company 23andMe announced that outside app developers would no longer have access to raw genomic data, as they have had since 2012. They will continue to have access to data through reports generated by the company. 23andMe cited privacy concerns–wisely, in this Editor’s opinion, to safeguard this burgeoning area of digital health. Seeking Alpha

TimiHealth is an affected firm that seeks to move customer data, with consent, to an allegedly more secure blockchain platform, TimiDNA, citing 23andMe’s monetization of their data and CMS’ Blue Button initiative, a recent meeting in which 23andMe participated as a developer. Blasting away, TimiHealth stated that “It flies in the face of the mission of CMS, and the MyHealthEData initiative and the goal of putting patients first.” Release

However, the consumer marketing of DNA testers such as 23andMe,, and smaller competitor Helix, has already led to multiple privacy questions on how the data of millions are being used and sold. 

This Editor would feel safe in assuming that most customers do not know nor particularly care that GlaxoSmithKline (GSK) as of July owns 50 percent of 23andMe via a $300 million investment. Both have announced a four-year partnership to use the 23andMe genetic database for drug research. For instance, the LRRK2 gene has been linked to some forms of Parkinson’s disease. GSK needs about 100 for a trial sample of one, but 23andMe has already provided 250 Parkinson’s patients who have agreed to be re-contacted for GlaxoSmithKline’s clinical trials. Scientific American

While most data is de-identified, you can agree to be contacted for further use in clinical trials, which is fine–but most users do not know how to opt out. It’s a surprisingly tricky process, as outlined in this useful Business Insider article, and you may not be able to withdraw all your data or have your saliva sample destroyed.

Data can be hacked and reprocessed. Three years ago, TTA explored reports on exactly how de-identified genomic data could be made identifiable through the ‘nefarious use’ of genomic data sets available through research networks [TTA 31 Oct 15].

Despite the trite, simplistic, and condescending commercials by on how someone found they had ethnic or national roots they never dreamed of, or were related to royalty, both giving meaning to their presumably mundane life, genetic info has value beyond the feel-good. It’s long past time for a plain language Genomic Data Bill of Rights.

  • Individuals should know how their personal genomic data is being used and how it is being protected
  • They should be able to opt out of use, identified and de-identified, easily–and not have to jump through hoops
  • Reporting/interpretation should also have integrity, consideration, and respect that it may upset a person or that it may not be interpreted correctly, which is a fundamental problem 
  • A more radical view is that the same individuals should be compensated when their data is used

This Editor will settle for the first two bullets, for now. 

The inevitable: class action lawsuit against 23andMe

Breaking News (which is No Big Surprise)

Updated 6 December: 23andMe continues to sell kits, but will provide only minimal genomic information and has suspended advertising. The Washington Post reports that “In a statement Thursday night, the firm went a step further, announcing that it would only provide ancestry information and raw health data. A spokesperson for the company said that “interpreted results” would not be included.” 23andMe had earlier this week suspended advertising (Cnet/Reuters). Customers who had purchased kits prior to the FDA letter on 22 November will receive full reports. 23andMe statement on website. Matthew Herper in Forbes today on how both parties were in a ‘kind of detente’ until the bolder claims (and undoubtedly the adverts with those claims) started. And for weekend consideration, the CoreGenomics (UK) blog looks at the genomic truth-or-consequences.

The Class Action Lawsuit:  Gigaom reports that a California plaintiff, Lisa Casey, filed on 27 November against 23andMe in the US District Court, Southern California citing false and misleading advertising of the Personal Genome Service (PGS) without “‘analytical or clinical validation” and that 23andMe “advertises and markets PGS as a reliable health aid”. Included in the class action complaint is (of course) every online and advertising claim regarding diseases and conditions that 23andMe’s genetic testing can assist a consumer, that (of course) FDA has not approved the marketing of the kits and that 23andMe markets the information to others even though “the test results are meaningless”. The lawsuit seeks damages extending well beyond the cost of the kit (of course), a jury trial and importantly to certify the class action and the attorney’s representation of same. Most interesting is the seemingly modest representation of Ms. Casey, Mark Ankcorn of his eponymous law firm (see his blog entry here). However, in tracing back his email domain, this Editor discovered that Mr. Ankcorn, a trial lawyer with a major-league track record of wins, recently joined the high-powered CaseyGerry firm of San Diego, which specializes in high-profile personal injury/death class action lawsuits including litigation against the NFL on TBI and CTE plus the 2011 Reno Air Races crash.

Our readers should not be surprised as our article last week was blunt on the red carpet 23andMe was figuratively rolling out for the lawyers: Get what your product does (your implied warrant of service) rock solid (23andMe is not at this point) and backed up by studies. Structure your claims as if a trial lawyer will come after you, because they come with the territory.

Well, they are here, and the mystery remains why 23andMe has chosen a path that for most early-stage companies would be corporate annihilation. 23andMe hit with class action over “misleading” genetic ads  Filing (PDF) Hat tip to David E. Albert, MD of AliveCor via Twitter (@DrDave01)

Related articles of interest: Dan Munro in Forbes, writing at the same time as this Editor on the kerfuffle, analyzes far more than here on the ‘test results are meaningless’ point. My comment is below his article (expand comments). See also Mr. Munro’s comment on Illumina (which 23andMe uses for its testing–and just gained premarket clearance for their MiSeqDx test) also confirming that 23andMe lost its Chief Legal Officer in July without a replacement, which would tend to cramp dealings with FDA.  See also Bernard Munos’ ‘fumbling gene’ takedown, from a scientific POV, of same. KPBS (San Diego) coverage.

Previously in TTA: FDA tells 23andMe genomic test to stop marketing