23andMe May Be Sold, Here’s How to Delete Your Data

• 23andMe is in financial crisis and could be sold or privatized, potentially putting the genetic information of more than 15 million people at risk.

• The company may sell your data if an acquisition occurs, as stated in their privacy policy, and the data is not protected by HIPAA.

• There’s still time to download and delete your data via your web browser or app.

23andMe, a DNA genetic testing and ancestry company, is facing a financial crisis. There is talk of a potential sale, but CEO Anne Wojcicki appears undecided on next steps. What happens to your genetic information if the company is sold?

What we know so far

The company has a deadline to meet: If 23andMe doesn’t raise its share price above $1 by November 4, the company will be delisted, raising the possibility that the company will be sold or sold. taken into private hands. This crisis comes after concerns about the company’s financial stability. recent privacy violationsand change of leadership.

Data sent to 23andMe is not HIPAA protected

Unfortunately, unlike your doctor’s office, 23andMes data is not protected by the Health Insurance Portability and Accountability Act (HIPAA), which is a US federal law that establishes privacy and data security to protect sensitive health information. This means that healthcare providers must follow strict rules to protect medical data, but companies like 23andMe are not required to do so by law. Although genetics companies are still required to comply with other privacy laws, such as the Federal Trade Commission (FTC) Act, they are not subject to the strict scrutiny of doctors and hospitals.

23andMe may sell your data

What’s worrying is that 23andMes Privacy Policy states that it is permitted to sell customer data in the event of a merger or acquisition. So if it ends up selling, guess what? Your data is gone along with everything else.

23andMe currently gives you the opportunity to opt out of research and advertising purposes. The Company also states that it does not knowingly disclose personal information to public databases, insurance companies, employers or law enforcement agencies unless required by a search warrant, valid court order or subpoena. However, if the company is sold, there is no guarantee that the new owners will adhere to the same policies.

Who will buy your DNA data?

DNA data is unique to you: not only can it identify you, but it can also be used to identify your relatives, predict the likelihood of certain diseases and discover ancestral history going back further. Thus, although the data is genetic testing has a huge number of benefitsit also raises ethical concerns about misuse.

So who would want to buy all this information? Insurance companies, pharmaceutical firms and biomedical research firms are the most obvious candidates, although they are far from alone. For example, insurers may want genetic data to estimate people’s likelihood of developing certain diseases that could affect life or health insurance premiums. Many countries, including the United States, have banned discrimination based on genetic data in employment and health insurance. However, this does not apply to other forms of insurance, and remember: just because something is prohibited does not mean it will never happen.

Can you delete your data?

If all of this is making you anxious, you’re definitely not alone. The good news is that you can delete your data.

To remove your data from 23andMeLog into your account in your browser or app and go to Settings using the gear icon:

Scroll down to the “Delete your data” option. If you want to download your data before deleting it, select “Access your data”:

Confirm your date of birth and click “Confirm”:

If you need a copy of your genetic data for your records, be sure to download it from Settings before clicking Delete.

Once you confirm the deletion, 23andMe will begin the process. The company will even destroy your physical DNA sample if you initially decided to keep it. Just keep in mind that once your data is gone, your account will be gone too, forever.

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There’s a lot of money in genetic data, and consumers need to know that. Whether it is worth the risk of handing over your genetic data to any company or not is still a matter of debate. I know I won’t.