JESUS FUCKING YES. I have a lot of feelings (mostly annoyance and anger) about 23andMe and this is like 99% of them. It is blatantly irresponsible to be sending people information about their genetics without providing them with adequate medical support to go with it. I’m really happy to see the FDA step in and point this out and demand that 23andMe take some responsibility.
(Feel free to ask me more about my 23andMe feelings if you would like a ramble about genetic ethics.)
I am so glad to see something that helps explain my feelings regarding genetic testing. This is like giving blood an not being informed that you are HIV positive, at least to a certain extent. Medical support is so important. The FDA may suck as acetaminophen related things, but they’re sorting things out. Good.
Okay, going to edit your analogy a little Sam. What 23andMe does is more like… someone taking your blood and tell you that you have low T cell counts. They don’t tell you how to interpret this information. It could mean you are HIV positive or it could mean you have another disease. It could just be random chance. You don’t know. All they’ve told you is that SOMETHING has happened, but don’t provide you the adequate medical support and counseling to understand and deal with that SOMETHING.
Also, fun fact, they then take that sample and go run as many tests and do as much research as they want without having to tell you the results and can profit off any discoveries they make. By being a private company, they get around rules of needing subject advocates (like an Institutional Review Board, whose purpose, in academic research, is to ensure the patients/subjects’ needs and rights aren’t violated). Basically you pay 23andMe to take your genetic information and they then get to do whatever they want with it and potentially make money off of it.
I HAVE A LOT OF 23ANDME ANGER ISSUES OKAY.