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When I first heard of DNA testing for genealogy, it was 23andMe. My children’s science teacher “did” 23andMe and loved all the medical information it provided and genealogical contacts it made. It was in the news then for breakthroughs and later, lawsuits and losing FDA approval and gaining it back again. Now it’s in the news again, but for more far-reaching lengths than if you should be able to wriggle your ears or curl your tongue or have a probability of a disease of some sort.
Now our privacy is at risk even more. I’m not generally a conspiracy theorist nor do I worry about my privacy much at all (yes, I can curl my tongue and no, I can’t wriggle my ears but I should be able to). But I also know that this could be really a test of what we feel is okay and what we do not.
So why is 23andMe in the news now (in case you haven’t heard)? The co-founder and CEO resigned and the company filed for Chapter 11 bankruptcy. The company cut 40% of the workforce and closed the therapeutics division that focused on drug development and research programs. This came after a huge data breach where 23andMe paid out $30 million to settle a class-action lawsuit from a 2023 personal information exposure where over 6 million people’s confidential personal and genetic data was compromised by hackers.
They are now looking to sell all their assets. While they say that the bankruptcy won’t change how they protect data, there is no obligation to make the same promise for a purchasing company. So, let’s say, for example, 23andMe (and its assets— your data) are sold to an entity in China who sets up a model where all the insurance companies can reach out to them before writing a life insurance policy. And let’s say that you have a marker that notes you have a leaning towards one day getting some sort of deadly disease. Could you be blackballed from life insurance for this prospective maybe-someday disease? Can your children and grandchildren and beyond be also blocked?
California Attorney General Rob Bonta issued a statement: “California has robust privacy laws that allow consumers to take control and request that a company delete their genetic data. Given 23andMe’s reported financial distress, I remind Californians to consider invoking their rights and directing 23andMe to delete their data and destroy any samples of genetic material held by the company.”
If you decide this is what you want to do, do you need help understanding what to do? The California Attorney General has a great write-up:
https://oag.ca.gov/news/press-releases/attorney-general-bonta-urgently-issues-consumer-alert-23andme-customers.
Thomas MacEntee also does a great job of walking through some steps: https://genealogybargains.com/turmoil-at-23andme/.
References:
Genealogy Bargains (Thomas MacEntee), “Turmoil at 23andMe – What Should I Do? BANKRUPTCY UPDATE” in Genealogy Bargains (Internet Site), at https://genealogybargains.com/turmoil-at-23andme/ (accessed 27 March 2025).
Office of California Attorney General (Rob Bonta), “Attorney General Bonta Urgently Issues Consumer Alert for 23andMe Customers” in Office of California Attorney General (Internet site), at https://oag.ca.gov/news/press-releases/attorney-general-bonta-urgently-issues-consumer-alert-23andme-customers (accessed 27 March 2025).
Associated Press, “23andMe cuts 40% of its workforce and discontinues therapeutics division” in AP (Internet site) at https://apnews.com/article/23andme-layoffs-discontinues-drug-development-f1356699312d1e5c3915cf4fbc400374 (accessed 27 March 2025).
Associated Press, “23andMe directors resign as the CEO of the genetic-testing company seeks to take it private” in AP (Internet site) at https://apnews.com/article/23andme-board-directors-resign-settlement-b3fda30fc8a95538f9391c5439c1cd52 (accessed 27 March 2025).
The Guardian, “GlaxoSmithKline hopes the gene genie can hold the centre” in The Guardian (Internet Site) at https://www.theguardian.com/business/nils-pratley-on-finance/2018/jul/25/glaxosmithkline-hopes-the-gene-genie-can-hold-the-centre (accessed 27 March 2025).
National Public Radio, “How to delete your 23andMe data after the company filed for bankruptcy” in NPR (Internet site) at https://www.npr.org/2025/03/25/nx-s1-5339695/how-delete-23andme-data-bankruptcy (accessed 27 March 2025).
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