A patient in Boston asked me to delete their genetic data and I couldn't.

I was at a medical tech conference in Boston last month, working a booth for a new health app. This older man came up, really upset. He had used a different service that shared his genetic data with a research group, which is in the tiny print of their terms. He found out and wanted it all gone. I had to tell him that once it's pooled with other data and anonymized, there's no way to pull just his out. He looked at me and said, 'So my DNA is just out there forever now?' It wasn't my company, but it hit me hard. We're building these huge databases for science, but the people in them lose all control. The tech is moving way faster than the rules. Has anyone else in healthcare run into this wall where the system just can't undo something, even when it's the right thing to do?

4 comments

4 Comments

ivanscott3mo ago

My friend's a lot like rose_reed, her data got pooled and she just felt erased, you know?

the_iris3mo ago

Honestly, is it that big a deal? It's anonymized data in a research pool. That guy will never be singled out from it.

betty_kelly91mo ago

the_iris says it's not a big deal cause it's anonymized, but I get why that guy felt sick. My own genetic data is probably floating around in some research pool right now. I signed up for a 23andMe type thing years ago for fun, and then they got bought out. Now I joke that my DNA is out there having a better social life than me, meeting other genomes at parties while I'm home in my pajamas.

rose_reed3mo ago

I used to agree with the_iris about anonymized data, but that story in Boston got me. It's not about being singled out, it's about losing the right to say no. Once it's in the pool, you're just gone.