this post was submitted on 10 Nov 2023
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Seems icky to me.
I donated my DNA to a research project. I have Crohn's disease and type 1 diabetes. I'm likely autoimmune prone.
I get updates about what it's used for. Usually trying to identify causes for autoimmune diseases. It feels good to help out the people fighting disease.
But that's sort of the point. You donated it knowing it was going to research. People using 23andme did not. And they will not be getting updates on the research either.
They were very clear it was for research in my memory. That was the reason I did it.
No, the project there referring to is run by 23andme. My whole family participates in the same research because so many of us have Crohn's disease.
Okay, but again, that is willing participation where you get informed of the results. Which is not what is being discussed here.