23andMe Reportedly Faces Bankruptcy – What Will Happen to Everyone’s DNA Samples?

By Megan Prictor, The University of Melbourne

Since it was founded nearly two decades ago, 23andMe has grown into one of the largest biotechnology companies in the world. Millions of people have used its simple genetic testing service, which involves ordering a saliva test, spitting into a tube, and sending it back to the company for a detailed DNA analysis.

But now the company is on the brink of bankruptcy. This has raised concerns about what will happen to the troves of genetic data it has in its possession.

The company’s chief executive, Anne Wojcicki, has said she is committed to customer privacy and will “maintain our current privacy policy”.

But what can customers of 23andMe themselves do to make sure their highly personal genetic data is protected? And should we be concerned about other companies that also collect our DNA?

What happened to 23andMe?

23andMe has had a rapid downfall after the 2021 high of its public listing.

Its value has dropped more than 97%. In 2023 it suffered a major data breach affecting almost seven million users, and settled a class action lawsuit for US$30 million.

Last month its seven independent directors resigned amid news the original founder is planning to take the company private once more. The company has never made a profit and is reportedly on the verge of bankruptcy.

What this might mean for its vast stores of genetic data is unclear. (See link for article)

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**Comment**

Many Lyme/MSIDS patients have had this genetic testing done, often to determine if they have a problem detoxing due to genetics.

The article advises:

The simplest thing is to delete your account, which opts you out of any future research and discards your saliva sample. But if your data has already been de-identified and used in research, it can’t be retrieved. And even if you delete your account, 23andMe says it will keep hold of information including your genetic data, date of birth and sex, to comply with its own legal obligations.

Madison Area Lyme Support Group