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?

3 comments

3 Comments

ivanscott25d ago

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

the_iris25d agoTop Commenter

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

rose_reed25d 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.