The personal genomics giant 23andMe, a household name in the world of direct-to-consumer DNA testing and once a Silicon Valley darling, has filed for bankruptcy! This could cause a personal information nightmare!
The irony here is that 23andMe has filed for bankruptcy due to not being able to recover from a data breach. The breach exposed 6.9 million users. As per USA Today, in 2024, 23andMe agreed to settle a class action lawsuit for $30 million. The money went to affected users, and 23andMe admitted no wrongdoing!
The makers of home DNA kits, such as 23andMe, are NOT subject to HIPAA (Health Insurance Portability and Accountability Act) laws, which ensure medical record privacy!
As the company’s financial unraveling plays out, there are many unanswered questions:
1. What happens to my personal data?
2. Can 23andMe sell or release my data?
3. Is there a way of deleting my data?
4. Is there a way of protecting my data?
These 4 questions and others remain for the over 14 million 23andMe customers.
For years, companies like Ancestry.com and 23andMe advertised on TV and radio, with their flashy ads stimulating the endless possibilities of family curiosity. Consumers bought “kits” for a few hundred dollars, trustingly mailed off their saliva, and eagerly awaited the results from scientific reports going back in some cases hundreds of years. In return, many received colorful charts and learned of newfound cousins…
Selling material goods is one thing, as materials can always be replaced. In this case, consumers trusted 23andMe with something that is irreplaceable, the blueprint of who they are! Now what?
Let’s take a look at bankruptcy. Bankruptcy is not just financial collapse, it often means “asset liquidation!” For a company like 23andMe, their most valuable asset is data, not office equipment or lab space. With personal details such as health histories, family connections and demographic profiles, this data can be a goldmine or a loaded weapon!
23andMe has stated it would not sell genetic data, and that privacy would remain a priority. The trust that once permeated their user base is now eroding quickly. Bankruptcy courts can override corporate promises when creditors are owed, and buyers are circling like sharks! Even if the data is NOT sold, the risk of leaks, mismanagement, and/or misuse increases dramatically in this type of situation.
The potential abuse or leaked data implications are staggering! This isn’t like a credit card number, which can be changed after a breach. Released health information can reveal a predisposition to diseases. Family secrets can be exposed, and relatives who never agreed to testing can be implicated. One can only imagine what could happen should this information end up in the hands of insurance companies, employers, or foreign governments! The days of blind trust in personal genomics are over!
Law enforcement officials, New York State Attorney General Leticia James’ office, and other state attorneys general offices (experts agree) are encouraging 23andMe customers to protect their privacy by:
1. Logging in and deleting their data, and…
2. Requesting the destruction of their DNA samples
At one point, the 23andMe website crashed. Their directive is to contact your state attorney general’s office after deleting your information and requesting DNA sample destruction. There should be a confirmation sent out once the deletion/destruction process takes place.