The personal genetics business is a threat to your privacy
#1
Surprising news recently emerged from the personal genetics business. The two leading direct-to-consumer companies in North America, 23andMe and Ancestry.com, announced within a week of each other that they were laying off a significant proportion of their workforce as a result of a steep drop in sales.

According to Second Measure, a company that analyzes website sales, 23andMe’s business plummeted 54 per cent and Ancestry kits sales declined 38 per cent.

Industry executives, market watchers and genealogists have all speculated about the causes of the drop in consumer interest. Market saturation? Early adopters tapped out? Limited usefulness? Recession fears? Whatever the theory, everyone seems to agree on one factor: privacy concerns.

Two third-party uses of genetic genealogy have given consumers pause for thought.

One: Almost every database shares information with the pharmaceutical industry. 23andMe was clear from the beginning that its health information would be used by its research partners and asked consumers to consent. But when it started to sign major deals with drug developers in 2015, consumers began to realize that, once again, similar to social sharing platforms, they were the product. A fact not so surprising from a company whose initial investors were from Google and Facebook.

Still, as long as testing prices were low and continued to fall, consumers bought the sell. Companies promised consumers they were contributing to a greater good. Medical science could use their genetic information to develop treatments, even if they might never need the drugs (or indeed if any drugs would ever be developed).

So even though the companies were profiting from their information, the number of people sending in their spit grew exponentially. Business was going well. Then a second third-party use was revealed and sales started tumbling.

Shortly after California detectives announced they had used GEDmatch, a public genetic genealogy database, to solve the cold case of a sadistic rapist and killer known as the Golden State Killer, the exponential rate of growth in the industry began to decline. That 2018 case set off a wave of privacy concerns about genetic genealogy and divided people who had already submitted their samples.

Almost overnight, a new industry was hatched using genetic genealogy databases to solve cold cases. GEDmatch, the company at the centre of the debate, was caught in the middle.

The GEDmatch founders, a couple of genealogists who just wanted to provide a place for genealogists to share DNA results without the privacy restrictions of the testing companies, eventually sold the company after attempting and failing to align its privacy policy with something viable for consumers and the company.

Sealing the marriage of genetic genealogy with policing, GEDmatch sold its database to Verogen, a forensics equipment company that services law enforcement. Ironically, Verogen promised it would offer better privacy protections and resist police incursions.

Last winter, one of the major testing companies, Family Tree DNA, revealed that it had been co-operating with the FBI unbeknownst to its users. Only a few weeks earlier U.S. News had ranked the company’s privacy policy as one of the best in the industry. Even a seasoned reporter studying the privacy policies closely could not discern that the company was sharing information without consumer consent.



What will happen now? With the mounting privacy concerns and a plethora of competing privacy bills in the works, companies are pivoting away from ancestry testing to focusing on whole gene testing health results. They are also testing in countries where the market uptake has been slow. Google has just announced that it will sponsor DNA collection in Brazil.

Expect less marketing about the past and more about the future, less about the thrills of ancestral stories and more about the health risks we have inherited and threaten to pass on, all couched in the same upbeat language of self-knowledge — to be shared widely.



https://nationalinterest.org/blog/buzz/d...eat-128972
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#2
Technically, any lab service, used by doctors everywhere, can siphon off samples of white blood cells ( red cells have no nuclei) and send off to NSA/CIA/FBI/XYZ....

The reapers with a CRISPR will soon be able to engineer a virus or a cancer to *individuals* rather than populations, like now.
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