Because it was based almost 20 years in the past, 23andMe has grown into one of many largest biotechnology firms on the earth.
Hundreds of thousands of individuals have used its easy genetic testing service, which includes ordering a saliva check, spitting right into a tube, and sending it again to the corporate for an in depth DNA evaluation.
However now the corporate is on the point of chapter. This has raised considerations about what’s going to occur to the troves of genetic knowledge it has in its possession.
The corporate’s chief govt, Anne Wojcicki, has mentioned she is dedicated to buyer privateness and can “maintain our current privacy policy”.
However what can prospects of 23andMe themselves do to verify their extremely private genetic knowledge is protected? And may we be involved about different firms that additionally gather our DNA?
What’s 23andMe?
23andMe is among the largest firms within the crowded market for direct-to-consumer genetic testing. It was based in 2006 in California, launching its spit check and Private Genome Service the next 12 months, at an preliminary value of US$999. This check received Time journal’s Invention of the 12 months in 2008.
Clients eagerly took up the chance to order a saliva assortment equipment on-line, spit within the tube and mail it again. In a number of weeks when the outcomes had been prepared they might discover out about their well being, ancestry, and different issues like meals preferences, concern of public talking and cheek dimples.
The 23andMe saliva check equipment. Picture: AdobeStock
The worth of testing kits dropped quickly (it’s now US$79). The corporate expanded globally and by 2015 had 1 million prospects. The agency went public in 2021 and initially the inventory worth soared. As of 2024, the corporate claims 14 million folks have taken a 23andMe DNA check.
23andMe rode the wave of in style pleasure and investor curiosity in genetics. It wasn’t alone. By 2022 the direct-to-consumer genetic testing market was valued at US$3 billion. The three largest gamers – 23andMe, AncestryDNA and MyHeritage – collectively maintain the genetic knowledge of virtually 50 million folks globally.
There are dozens of smaller gamers too, with some specializing in rising markets similar to MapMyGenome in India and 23mofang and WeGene in China.
What occurred to 23andMe?
23andMe has had a fast downfall after the 2021 excessive of its public itemizing.
Its worth has dropped greater than 97%. In 2023 it suffered a significant knowledge breach affecting virtually seven million customers, and settled a category motion lawsuit for US$30 million.
Final month its seven unbiased administrators resigned amid information the unique founder is planning to take the corporate non-public as soon as extra. The corporate has by no means made a revenue and is reportedly on the verge of chapter.
What this may imply for its huge shops of genetic knowledge is unclear.
When folks join a 23andMe check the corporate assures them: “your privacy comes first”. It guarantees it’ll by no means share folks’s DNA knowledge with employers, insurance coverage firms or public databases with out consent. It places alternative within the palms of customers about whether or not their spit pattern is stored by the corporate, and whether or not their de-identified genetic and different knowledge is utilized in analysis. 4 in 5 individuals who purchased a 23andMe check have agreed to their knowledge being utilized in analysis.
Nevertheless, in the event you dig a bit deeper, it’s clear that 23andMe makes use of folks’s knowledge in many various methods, similar to sharing it with service suppliers. Maybe most significantly, if the corporate goes bankrupt or is bought, folks’s info is perhaps “accessed, sold or transferred” as properly.
In an announcement to The Dialog, a 23andMe spokesperson mentioned Wojcicki is “not open to considering third-party takeover proposals”, and that within the occasion of any future possession change, the corporate’s current knowledge privateness agreements with prospects “would remain in place unless and until customers are presented with, and agree to, new terms and statements – and only after receiving appropriate notice of any new terms, under applicable data protection laws”.
Ideas for folks to guard their genetic knowledge
With 23andMe within the highlight, folks may need to take steps to guard their genetic knowledge (though specialists say there’s probably not any extra threat now than there has all the time been).
The best factor is to delete your account, which opts you out of any future analysis and discards your saliva pattern. But when your knowledge has already been de-identified and utilized in analysis, it could actually’t be retrieved. And even in the event you delete your account, 23andMe says it’ll maintain maintain of knowledge together with your genetic knowledge, date of start and intercourse, to adjust to its personal authorized obligations.
Shopping for a DNA check on-line may really feel enjoyable and rewarding and it’s definitely been marketed that means. There are many excellent news tales about how getting these check outcomes has helped folks to attach with misplaced household or perceive extra about their well being dangers. Individuals simply want to purchase checks with their eyes open about what this may imply.
First, the outcomes won’t be all optimistic. Discovering out about well being dangers with out steerage from a well being skilled may be scary. Studying that the individual you thought was your mum or dad really isn’t, is an final result for as many as 1 in 20 individuals who’ve purchased a DNA check on-line.
Second, each firm promoting DNA checks does so with a lot of authorized circumstances hooked up. Individuals click on via these with no second thought however researchers have proven it’s value taking a better look. Contemplate what the corporate says about what it’ll do together with your knowledge and your pattern, how lengthy they may maintain it, who else can entry it, and the way straightforward it is going to be to delete later.
There are tips from organisations like Australian Genomics that may assist. And keep in mind that if an organization holding your DNA profile is bought, it is perhaps arduous to ensure that knowledge is protected.
So perhaps rethink giving a DNA check as a Christmas present.
Megan Prictor, Senior Lecturer in Legislation, The College of Melbourne
This text is republished from The Dialog underneath a Artistic Commons license. Learn the unique article.
