When my mom passed away, I spent months sorting through everything that needed attention—closing accounts, filing forms, tracking down documents. It was exhausting, painful, and eventually, led to the creation of Elayne. I wanted to help people avoid the stress and confusion that my family experienced.
In March, after seeing the news about 23andMe’s bankruptcy, I remembered that my mom had used the service. Her DNA, along with other personal data, was still sitting in their system.
It was the kind of thing that I hadn’t thought about in years. And a reminder of how easy it is to overlook sensitive information when you’re settling a loved one’s affairs.
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The Data We Leave Behind
Through Elayne, I’ve seen that many of us don’t include our digital footprint in end-of-life planning. We think about bank accounts, real estate, maybe social media—but rarely our data. And yet, quite often, I talk to family members whose loved ones had their identities stolen after they passed away. This includes fraudulent charges on credit cards, and loans being taken out in the deceased’s name. It’s crushing to see families navigating the darkest days of their lives, and then having to deal with identity theft as well.
For context, when it comes to 23andMe, the service has been used by more than 15 million people. Many have passed away, but their genetic profiles are still sitting on servers. Still linked to email addresses. Still attached to logins and payment methods. And often, with no clear ownership or oversight.
This isn’t just a tech problem; it’s a human one. When we don’t account for digital assets in estate planning, we leave behind fragments of someone’s identity. Pieces that can be misunderstood, misused, or even sold.
The Risk Is Real
After 23andMe filed for Chapter 11 bankruptcy, many of the headlines focused on the business. But for families, it raised a more personal concern: what happens to genetic data when a company goes through a big change or winds down altogether?
This isn’t speculation. The risks are already here.
By some estimates, 2.5 million deceased Americans have their identities stolen each year. The fraud is so widespread that it even has a name: ghosting. It’s how criminals open credit cards, file false tax returns, and collect benefits using someone else’s name.
Genetic data adds another layer of exposure. It can reveal health information. It can be traced to living relatives. It can be matched to family members who never opted in. And the protections we expect while alive often don’t extend beyond death.
It Shouldn’t Be This Hard
The pain of losing a loved one is overwhelming. The last thing on your mind is an old DNA test, or how that data could be misused.
But these loose ends don’t disappear on their own. Someone has to step in. Submit the requests. Advocate for privacy. And make sure that sensitive information is handled with care.
That’s why I’m proud of our work at Elayne. We help families take care of the digital details that aren’t talked about nearly enough, but that matter deeply when someone passes away. From removing a loved one’s presence on platforms like 23andMe, to managing logins, subscriptions, and other accounts, we help close the loop with clarity and compassion.
What You Can Do
If someone you love used a DNA service like 23andMe, it’s worth taking a closer look. Even if the account seems inactive. Even if you’re not sure where to begin.
And even if they passed away years ago and you’ve long settled their affairs, we recommend that you remove a deceased family member’s 23andMe data as soon as possible, just as you would when closing a loved one’s social media accounts. To make things easier, we created a free guide that shows how to delete their account.
We wrote it because we’ve navigated the process for ourselves and our clients, and experienced how difficult it is. The guide includes:
- The documents you’ll need
- Step-by-step instructions for submitting a request
- Destroying a saliva sample
- What happens after your request is processed
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Grief may not come with a manual, but this part can. We help navigate these topics with more certainty, and a little less weight on your shoulders.
