tl;dr - You're not legally protected.
tl;dr - You're not legally protected. Don't give out your genetic information or it could be used against you. This is not a case of well if you don't do anything wrong you don't have to worry, either. Think of what the Nazis would have done if they'd had actual DNA databases to work with.
https://www.cnn.com/2018/04/27/health/golden-state-killer-genetic-privacy/index.html
https://www.cnn.com/2018/04/27/health/golden-state-killer-genetic-privacy/index.html
https://www.cnn.com/2018/04/27/health/golden-state-killer-genetic-privacy/index.html
https://www.cnn.com/2018/04/27/health/golden-state-killer-genetic-privacy/index.html
Which is why as much as I’d love to try out a service like 23andme I’ve refused.
ReplyDeleteCongress started down the right path with GINA, but at this point it’s a question of if we get to keep it, and not do we extend it to allow for people to start embracing things like that (I think there’s also gut microbiome services that are starting to come out now as well).
Which is incredibly harmful, since it’s only as we aggregate this information that we can start to tease out the larger pictures.
When they caught Dennis Rader (BTK), one of the key bits of final conclusive evidence was a DNA test of his daughter’s Pap smear, which has always bugged me on some level - and they had a warrant.
ReplyDeleteIt’s a complicated issue, not improved by the way we always approach complicated issues: ham-handedly, with blithe disregard for potential nuance.
Totally. GINA is limited to medical and research contexts, which is the only place I'd ever agree to any genetic evaluation.
ReplyDeleteBased on what I've seen through work, there's little limitation on the potential to create databases in the context of medical science. Somebody just has to fund it. I would never want to see it done in a situation where someone can exploit the information like this.
I'd also like to see something like Europe's "right to be forgotten" law in regards to this commercial genetic information. People should be able to ask to have their information removed from the database. There should also be a requirement that the kits come with a large and obvious warning label as to your loss of ownership of your genetic info and the commercial and other usage of it.
None of which would have kept the police from finding this person, but that's another specific issue where we need to determine whether we want this free for all attitude that everything is public until it's legislated that it's not.
I just saw the pap smear thing. That's bullshit. It's a straight up violation of her rights. Unless she agreed to it, which I would still have a lot of questions about. Man, now we need to have courses in law school about genetics, too. Not that some people don't think the 4th amendment, among other things, is just a guideline.
ReplyDeleteF-L Silver part of the problem is we’re looking at new things as, well, new, and not just old things in new clothing.
ReplyDeletePart of it is that we need to start telling companies that once something’s in a database of theirs it’s not actually theirs, any more than how the money in my checking account is still mine, even if my bank is holding it for me (yes, yes, I know that technically it’s not there, it’s out to others in the form of mortgages and loans, but I can still walk in and withdraw some or all of it, and walk out cash in hand).
F-L Silver yeah, she certainly didn’t consent - she had no reason to believe that her doting pillar-of-the-community father was a 20-years-dormant serial killer. Shit, if she’d been asked to consent, she would probably not only have refused, she’d have been so offended on her dad’s behalf she would have told him about it.
ReplyDeleteComplicated.
Pamela Korda plus what happens to someone that gets one of your hairs that fell off in a public place? If it has the follicle attached they can get your genetic material from that, IIRC.
ReplyDeletecnn.com - Artist creates faces from DNA left in public - CNN
Basically, Gattaca.
ReplyDelete