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 includes 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 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 govt, Anne Wojcicki, has mentioned she is dedicated to buyer privateness and can “preserve our present privateness coverage”.
However what can clients of 23andMe themselves do to verify their extremely private genetic information is protected? And will we be involved about different corporations that additionally gather 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 12 months, at an preliminary value of US$999. This take a look at gained 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 a number of weeks when the outcomes have 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 23andMe saliva take a look at package. Picture: AdobeStock
The worth of testing kits dropped quickly (it’s 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 take a look at.
23andMe rode the wave of common 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 resembling 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 information breach affecting virtually 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 may imply for its huge shops of genetic information is unclear.
When individuals join a 23andMe take a look at the corporate assures them: “your privateness comes first”. It guarantees it’s going to by no means share individuals’s DNA information with employers, insurance coverage corporations or public databases with out consent. It places selection within the arms of shoppers about whether or not their spit pattern is saved 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 take a look at have agreed to their information being utilized in analysis.
Nonetheless, should you dig a bit deeper, it’s clear that 23andMe makes use of individuals’s information in many various methods, resembling sharing it with service suppliers. Maybe most significantly, if the corporate goes bankrupt or is bought, individuals’s data is likely to be “accessed, bought or transferred” as properly.
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 current information privateness agreements with clients “would stay in place until and till clients are offered with, and comply with, new phrases and statements – and solely after receiving acceptable discover of any new phrases, below relevant information safety legal guidelines”.
Ideas for individuals to guard their genetic information
With 23andMe within the highlight, individuals may wish to take steps to guard their genetic information (though consultants say there’s probably not any extra threat 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 information has already been de-identified and utilized in analysis, it could’t be retrieved. And even should you delete your account, 23andMe says it’s going to hold maintain of data together with your genetic information, date of start 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’s actually been marketed that manner. There are many excellent news tales about how getting these take a look at 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 may imply.
First, the outcomes may not be all constructive. Discovering out about well being dangers with out steerage from a well being skilled will be scary. Studying that the particular person you thought was your mum or dad truly isn’t, is an end result for as many as 1 in 20 individuals who’ve purchased a DNA take a look at on-line.
Second, each firm promoting DNA assessments does so with plenty of authorized circumstances connected. Folks click on via these and not using a second thought however researchers have proven it’s value taking a more in-depth look. Contemplate what the corporate says about what it’s going to do along with your information and your pattern, how lengthy they’ll hold 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 likely to be onerous to make it possible for information 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 Artistic Commons license. Learn the authentic article.
