Because it was based practically twenty years in the past, 23andMe has grown into one of many largest biotechnology corporations on this planet. Hundreds of thousands of individuals have used its easy genetic testing service, which entails ordering a saliva take a look at, 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 is going to occur to the troves of genetic knowledge it has in its possession.
The corporate’s chief government, Anne Wojcicki, has stated she is dedicated to buyer privateness and can “maintain our current privacy policy”.
However what can clients of 23andMe themselves do to ensure their extremely private genetic knowledge is protected? And may we be involved about different corporations that additionally accumulate our DNA?
What’s 23andMe?
23andMe is likely one of the largest corporations within the crowded market for direct-to-consumer genetic testing. It was based in 2006 in California, launching its spit take a look at and Private Genome Service the next yr, at an preliminary value of US$999. This take a look at received Time journal’s Invention of the Yr 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 might discover out about their well being, ancestry, and different issues like meals preferences, worry 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 folks have taken a 23andMe DNA take a look at.
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 just about 50 million folks globally.
There are dozens of smaller gamers too, with some specializing in rising markets comparable 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 main 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 take a look at the corporate assures them: “your privateness comes first“. It guarantees it should by no means share folks’s DNA knowledge with employers, insurance coverage corporations 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 used in analysis. 4 in 5 folks who purchased a 23andMe take a look at have agreed to their knowledge being utilized in analysis.
Nonetheless, when you dig a bit deeper, it is clear that 23andMe makes use of folks’s knowledge in many various methods, comparable to sharing it with service suppliers. Maybe most significantly, if the corporate goes bankrupt or is bought, folks’s info is likely to be “accessed, bought or transferred” as nicely.
In a press release to The Dialog, a 23andMe spokesperson stated 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 clients “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”.
Suggestions for folks to guard their genetic knowledge
With 23andMe within the highlight, folks may need to take steps to guard their genetic knowledge (though consultants say there’s not likely any extra danger now than there has at all times 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 will probably’t be retrieved. And even when you delete your account, 23andMe says it should maintain maintain of data together with your genetic knowledge, date of delivery and intercourse, to adjust to its personal authorized obligations.
Shopping for a DNA take a look at on-line may really feel enjoyable and rewarding and it is actually been marketed that method. There are many excellent news tales about how getting these take a look at outcomes has helped folks to attach with misplaced household or perceive extra about their well being dangers. Folks simply want to purchase exams 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 steering from a well being skilled may be scary. Studying that the particular person you thought was your mum or dad truly is not, is an end result for as many as 1 in 20 folks who’ve purchased a DNA take a look at on-line.
Second, each firm promoting DNA exams does so with a lot of authorized circumstances hooked up. Folks click on by these with no second thought however researchers have proven it’s price taking a better look. Contemplate what the corporate says about what it should do along with your knowledge and your pattern, how lengthy they’ll maintain it, who else can entry it, and the way straightforward it will likely 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 likely to be exhausting to make it possible for knowledge is protected.
So possibly rethink giving a DNA take a look at as a Christmas reward.
Megan Prictor, Senior Lecturer in Regulation, The College of Melbourne
This text is republished from The Dialog below a Inventive Commons license. Learn the unique article.
