When 23andMe was founded in 2006, it was the first company to offer at-home DNA testing and interpretive results. As it started raising venture capital and picking up in popularity, concerns were raised about data privacy. In 2013, the FDA temporarily ordered them to stop selling their testing kits while they did a regulatory review. In 2023, there was a data breach involving almost seven million users’ data. But, for most people, myself included, the allure of knowing more specific details about your heritage was irresistible. I finally talked a hesitant Mr. Rosie into doing it with me in 2017. To date, more than 15 million people have used the service. Once the company went public in 2021, it stopped being profitable. After a series of financial problems, company wide layoffs, and dramatic events that included the entire board resigning last fall, 23andMe filed for Chapter 11 bankruptcy on Sunday night.
Gene testing firm 23andMe said on Sunday it had filed for Chapter 11 bankruptcy protection in order to facilitate its sale, after years of struggling to find a sustainable business model. In a statement announcing the bankruptcy, the firm said its CEO, Anne Wojcicki, had resigned effective immediately. She will remain on the company’s board of directors.
“After a thorough evaluation of strategic alternatives, we have determined that a court-supervised sale process is the best path forward to maximize the value of the business,” Mark Jensen, chair and member of the Special Committee of the board of directors, said in the statement.
Late last year, the company said it was cutting about 40% of its workforce – around 200 employees – and discontinuing further development of all its therapies as part of a restructuring program, according to Reuters. In September, all seven of the company’s independent directors resigned en masse, citing their frustration with the CEO’s “strategic direction” and efforts to take 23andMe private. The company, which went public in 2021, had never made a profit. The stock shot up following the listing, briefly valuing the company at $6 billion. Wojcicki, who owned 49% of the company, became a billionaire.
Its core product, an at-home DNA testing kit, offers “personalized genetic insights” that the company says can flag potential health risks such as one’s likelihood of developing Alzheimers or certain cancers. 23andMe tried to convert one-time buyers into subscribers with the promise of continued feedback and personalized wellness plans but had reportedly fallen short of its goals.
Since the company will eventually be sold off via bankruptcy court, there are a lot of concerns about whether or not its customers’ genetic data will be safe. There is good reason to be concerned. According to TechCrunch, 23andMe is not beholden to HIPAA laws. Instead, it follows its own privacy policies, which can be changed at the company’s discretion. 23andMe’s current policy states, “If we are involved in a bankruptcy, merger, acquisition, reorganization, or sale of assets, your Personal Information may be accessed, sold or transferred as part of that transaction…” This means that users are at the mercy of whoever ends up buying the company’s intentions. The good news is that you can download and delete your genetic data from 23andMe’s database. WaPo has compiled an easy step-by-step guide on how to delete your personal info.
How to delete genetic data from 23andMe:
1. Log into your 23andMe account.
2. Go to your Profile, then tap Settings.
3. Scroll to the “23andMe Data” section at the bottom of the page and click View.
4. If you want to download your data, select what you want.
5. Scroll to the “Delete Data” section and click Permanently Delete Data.
6. Confirm your request: You’ll receive an email from 23andMe, and click the link in the email to confirm.
My husband and I both just used this guide to delete our genetic data. I genuinely liked learning more about my heritage. One-half of my family tree was basically unknown and so many blanks were filled in. I also learned that I don’t have an increased risk of Alzheimer’s or breast cancer, which was a relief because both run on one side of my family and I had no idea about the other side. I never bothered with their additional surveys or anything like that because I got exactly what I wanted out of it. It truly sucks that our data is a hot commodity that’s worth billions of dollars to big companies. Greed ruins everything.
Photos credit: Xavier Collin/Image Press Agency/Avalon, Jeffrey Mayer/Avalon