Because it was based almost twenty years in the past, 23andMe has grown into one of many largest biotechnology firms on this planet. Tens of millions of individuals have used its easy genetic testing service, which entails 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 getting ready to chapter. This has raised considerations about what’s going to occur to the troves of genetic information it has in its possession.
The corporate’s chief government, Anne Wojcicki, has mentioned she is dedicated to buyer privateness and can “keep our present privateness coverage”.
However what can clients of 23andMe themselves do to ensure their extremely private genetic information is protected? And may we be involved about different firms that additionally acquire our DNA?
What’s 23andMe?
23andMe is likely one of 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 yr, at an preliminary price of US$999. This check received Time journal’s Invention of the 12 months in 2008.
Prospects eagerly took up the chance to order a saliva assortment package on-line, spit within the tube and mail it again. In just a few weeks when the outcomes had been prepared they may discover out about their well being, ancestry, and different issues like meals preferences, concern of public talking and cheek dimples.
The value of testing kits dropped quickly (it is now US$79). The corporate expanded globally and by 2015 had 1 million clients. The agency went public in 2021 and initially the inventory value soared. As of 2024, the corporate claims 14 million individuals have taken a 23andMe DNA check.
23andMe rode the wave of fashionable 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 information of just about 50 million individuals globally.
There are dozens of smaller gamers too, with some specializing in rising markets akin to MapMyGenome in India and 23mofang and WeGene in China.
What occurred to 23andMe?
23andMe has had a speedy downfall after the 2021 excessive of its public itemizing.
Its worth has dropped greater than 97%. In 2023 it suffered a main information breach affecting nearly seven million customers, and settled a category motion lawsuit for US$30 million.
Final month its seven impartial administrators resigned amid information the unique founder is planning to take the corporate personal as soon as extra. The corporate has by no means made a revenue and is reportedly on the verge of chapter.
What this would possibly imply for its huge shops of genetic information is unclear.
When individuals join a 23andMe check the corporate assures them: “your privateness comes first“. It guarantees it should by no means share individuals’s DNA information with employers, insurance coverage firms or public databases with out consent.
It places alternative within the palms of shoppers about whether or not their spit pattern is stored by the corporate, and whether or not their de-identified genetic and different information is used in analysis. 4 in 5 individuals who purchased a 23andMe check have agreed to their information being utilized in analysis.
Nevertheless, if you happen to dig a bit deeper, it is clear that 23andMe makes use of individuals’s information in many various methods, akin to sharing it with service suppliers. Maybe most significantly, if the corporate goes bankrupt or is bought, individuals’s info is perhaps “accessed, bought or transferred” as nicely.
In an announcement to The Dialog, a 23andMe spokesperson mentioned Wojcicki is “not open to contemplating third-party takeover proposals”, and that within the occasion of any future possession change, the corporate’s present information privateness agreements with clients “would stay in place except and till clients are introduced with, and comply with, new phrases and statements – and solely after receiving applicable discover of any new phrases, underneath relevant information safety legal guidelines”.
Ideas for individuals to guard their genetic information
With 23andMe within the highlight, individuals would possibly wish to take steps to guard their genetic information (though specialists say there’s probably not any extra danger now than there has at all times been).
The only factor is to delete your account, which opts you out of any future analysis and discards your saliva pattern. But when your information has already been de-identified and utilized in analysis, it might’t be retrieved. And even if you happen to delete your account, 23andMe says it should maintain maintain of data together with your genetic information, date of start and intercourse, to adjust to its personal authorized obligations.
Shopping for a DNA check on-line would possibly really feel enjoyable and rewarding and it is actually been marketed that approach. There are many excellent news tales about how getting these check outcomes has helped individuals to attach with misplaced household or perceive extra about their well being dangers. Folks simply want to purchase assessments with their eyes open about what this would possibly imply.
First, the outcomes won’t be all constructive. Discovering out about well being dangers with out steering from a well being skilled might be scary. Studying that the individual you thought was your mum or dad truly is not, is an end result for as many as 1 in 20 individuals who’ve purchased a DNA check on-line.
Second, each firm promoting DNA assessments does so with a lot of authorized situations connected. Folks click on by means of these and not using a second thought however researchers have proven it’s price taking a better look. Take into account what the corporate says about what it should do together with your information and your pattern, how lengthy they’ll maintain it, who else can entry it, and the way simple will probably be to delete later.
There are pointers 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 laborious to make it possible for information is protected.
So perhaps rethink giving a DNA check as a Christmas reward.
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.
