Should Older Adults Be Concerned About 23andMe Data?

23andMe is (or was before filing for bankruptcy) a popular service that gives people insights into their ancestry and health using their DNA.

You simply send them a saliva sample, and in return, you can learn more about your family history, your possible risk for diseases, and more.

Over the years, 23andMe says more than 15 million people have used their service.

While they don’t say exactly how many of those users are older adults, the company shared that they’ve done Alzheimer’s research using DNA data from over one million customers aged 60 and up. That suggests that a significant number of older adults have already shared their genetic information with the company.

But recently, 23andMe filed for bankruptcy. Now, it’s looking for a buyer — and that includes selling off parts of the business, which may involve customer data. This has raised serious concerns about what happens to all the information people have shared over the years.

What Data Do They Have?

It’s not just your DNA.

23andMe collects much more than just your DNA. If you’ve filled out their surveys, they may also have information about your health, drinking habits, how you feel about policies like Daylight Saving Time, and even your opinions on things like Covid-19.

They also store personal information such as your home address, family connections, payment details, and messages you’ve sent through their platform. They track your device information, too — including your IP address — which means they know where and how you logged in.

Together, all these billions of data points create a deeply personal profile that can be linked back to you.

Unlike a stolen credit card or email account, your DNA can’t be changed if it’s compromised.

And when that kind of information falls into the wrong hands, it opens the door to serious problems.

The Risks One major concern is stalking or harassment. If someone gains access to family location data or home addresses, they could target individuals or their loved ones.

Another concern is blackmail. Imagine someone getting access to your DNA data and finding out that you carry a gene linked to a stigmatized health condition — something like a higher risk for a mental illness, a rare disease, or a genetic trait you’d prefer to keep private. If that information ends up in the wrong hands, a bad actor could threaten you to publicize this information unless you pay them.

Your genetic information could also be misused in work settings. Let’s say your DNA reveals a higher chance of developing a mental health condition, like bipolar disorder or Alzheimer’s. Even if you’re perfectly healthy, an employer might quietly pass you over for a promotion or avoid hiring you, fearing you’ll need time off in the future or that you’re a “risk.”

It’s also possible that employers might quietly use this kind of information when making employment decisions — especially if they find out about mental health conditions or inherited illnesses.

Some experts have warned about more extreme threats — like the use of genetic data in creating targeted biological weapons.

These risks while theoretical, should be a major concern.

In 2023, a 23andMe data breach exposed information of millions of users.

One plaintiff who filed a lawsuit against the company said their family’s data was placed into specially curated lists that could be sold in the dark web to people looking to cause harm.

And it’s not just the person who sent in their DNA who could be affected. Your DNA overlaps with your relatives'.

If a family member has used 23andMe, parts of your genetic profile could already be in their system — even if you never sent in a sample yourself. Because family members share DNA, one person’s test can expose information about many others.

What should you do?

For seniors, caregivers, and families, this situation is a reminder to pause before sharing sensitive information online — especially something as personal and permanent as DNA.

Secondly, if you’ve used 23andMe, now might be a good time to think about whether you want your data to stay with them.

To Delete Genetic Data from 23andMe:

1. Consumers can delete their account and personal information by taking the following steps:

2. Log into your 23andMe account on their website. 

3. Go to the “Settings” section of your profile.

4. Scroll to a section labeled “23andMe Data” at the bottom of the page. 

5. Click “View” next to “23andMe Data”

6. Download your data: If you want a copy of your genetic data for personal storage, choose the option to download it to your device before proceeding.

7. Scroll to the “Delete Data” section. 

8. Click “Permanently Delete Data.” 

9. Confirm your request: You’ll receive an email from 23andMe; follow the link in the email to confirm your deletion request.

To Destroy Your 23andMe Test Sample:

If you previously opted to have your saliva sample and DNA stored by 23andMe, but want to change that preference, you can do so from your account settings page, under “Preferences.”

To Revoke Permission for Your Genetic Data to be Used for Research:

If you previously consented to 23andMe and third-party researchers to use your genetic data and sample for research, you may withdraw consent from the account settings page, under “Research and Product Consents.”

An Important Caveat: However, it’s important to understand that not all data can be deleted.

Some parts of your information — like your birthdate, sex, or anything already used in finished research studies — may be kept to meet legal or research obligations.

And if your data has already been sold or shared, you may not be able to fully remove it from circulation. Complicated terms like this is another reason to be cautious when sharing sensitive data.

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