23andMe Files for Chapter 11 Bankruptcy; Genetic Data of 15 Million Users at Risk of Sale
Updated
The genetic data of 15 million people will soon be for sale as 23andMe has filed for Chapter 11 bankruptcy. The attorneys general for California and New York issued consumer alerts to advise consumers to take action to protect their data. New York AG Rob Bonta said “There’s health insurance companies that are interested in this data, there’s life insurance companies that are interested in this data.”
Pharma company GlaxoSmithKline paid $300 million to 23andMe in 2018 as part of a four-year deal to have access to its DNA information. Pfizer first signed a partnership deal with the company in 2015. In 2010, Johnson and Johnson Development Corporation provided funds to the company.
About 80% of users opted into this research, and currently, the terms of service still remain the same. While users currently have to give authorization to the company for the data to be shared with third parties, the terms of service agreement can change at any time.
23andMe states that users’ data will continue to be protected, but the new owner of the genetic data can change the terms of service at any time. The genetic information is valuable to insurance companies, pharmaceutical companies, and law enforcement operations.
Last year, Tracy Beanz and Michelle Edwards reported about the rise and fall of 23andMe for The Highwire. As with other data permissions internet users allow regularly, many users likely gave permission to the company to share their genetic data without realizing what they were agreeing to.
Studies have been conducted using genetic data from 23andMe and similar companies. Pharmaceutical companies have also used them in the development of new drugs. Law enforcement agents and the FBI have used genetic databases to solve cold case crimes.
In October 2023, 23andMe had a data breach that affected 6.9 million users. The hack of sensitive data from 23andMe revealed far more sensitive information and affected approximately 14,000 people. These hackers obtained “uninterrupted raw genotype data” and sold some of this information on the dark web. Many of the victims were Ashkenazi Jewish, which signifies the hack may have been a targeted effort.
Adam Rutherford, a geneticist, wrote an op-ed for the Guardian stating he will not mourn the bankruptcy of 23andMe and “its jumble of useless health information.” Rutherford wrote, “The genius of its business model was not simply to get you to volunteer this personal data to a private company, but to persuade you to actually pay to give it to them. It then commercialised your DNA by selling it on to pharmaceutical companies, which would use it to develop drugs, ultimately for profit. It was the type of racket that a mob boss might look on and say: ‘And this is legal?’”
Rutherford further explained that people paid 23andMe to learn about where they came from, but instead received a “scientific trinket” that purports to identify geographic ancestry via DNA. He said ancestors from 50 generations ago come from all over the world and their geographic location cannot be determined by genetic tests.
Rutherford explained, “What 23andMe was actually doing was comparing your DNA to that of other paying customers, and matching up where they live today, and inferring that you have ancestors in that location.”
Multiple major media outlets have reported that users should delete their data from the platform immediately. Once a sale is initiated and approved, users could lose the ability to control how their genetic data is used.
The conclusion made by Rutherford in his op-ed is that 23andMe convinced customers to hand over their valuable information and to pay them for doing so. The notion is that the individuals paying for the service are really the product. It is a concept that has been associated with social media companies that offer a free service, which means that the individuals utilizing the service are the product.
