23andMe can do whatever they want with your data. It totally boggles my mind that someone would give a private company legal, full, and complete access to what makes you, you. We're still in the infancy of understanding what we can do with our genomes. Giving all our information over to an entity without a fiduciary responsibility to protecting your personal data is just idiotic.
I see it as helping myself future-proof myself. If I know I have inherent risks as I age, or worse, genetic mutations that could passed to my children, personally it's worth the possible data abuse to me. It would be very unfortunate if this turns into Gattaca though.
23andMe meets FDA standards, adds back wellness reports
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Re: 23andMe meets FDA standards, adds back wellness reports
#52Anyone else see this Forbes article?[1] It seems to indicate a high level of naivety on the part of 23&Me in terms of the regulatory requirements around genetic testing. What Hibbs found was that 23andMe and the FDA were not even speaking the same language. The FDA is guided by laws and regulations that limit what it can say, and 23andMe wasn’t picking up on the agency’s cues. FDA officials would leave 23andMe an ope…
Seems to be working ok for them. Perhaps the nature of genetic testing changes things.
Re: 23andMe meets FDA standards, adds back wellness reports
#5323andMe can do whatever they want with your data. It totally boggles my mind that someone would give a private company legal, full, and complete access to what makes you, you. We're still in the infancy of understanding what we can do with our genomes. Giving all our information over to an entity without a fiduciary responsibility to protecting your personal data is just idiotic.
We're still in the infancy of diagnosing psychological state through word choice, yet uninformed people still talk to other people over chat. We're still in the infancy of detecting disease through microbiome analysis, yet some foolish people still meet in person without signed contracts not to collect that information. We're still in the infancy of analyzing video to detect mental state, yet people routinely go out…
Re: 23andMe meets FDA standards, adds back wellness reports
#54Earlier quoted context omitted.
I remember reading somewhere that they share the DNA info with gov't agencies.
Probably. Unfortunately, this precludes someone who is privacy-conscious from using these products, as cool as they may seem. I can't imagine how the government would put this information to anything other than malicious use. SNP sequencing is the ultimate fingerprint, far more individually identifying than anything else as of yet. Imagine having 900,000+ criterion to cross reference to determine identity.
Re: 23andMe meets FDA standards, adds back wellness reports
#55Please someone in another country provide the data 23 and me used to provide!!!
What information is lacking from the new reports? And do they provide all the raw data? If so, is it possible to do your own research based on that raw data? (I'm not arguing with you - I wish they would provide all the data possible).
Re: 23andMe meets FDA standards, adds back wellness reports
#5623andMe can do whatever they want with your data. It totally boggles my mind that someone would give a private company legal, full, and complete access to what makes you, you. We're still in the infancy of understanding what we can do with our genomes. Giving all our information over to an entity without a fiduciary responsibility to protecting your personal data is just idiotic.
Re: 23andMe meets FDA standards, adds back wellness reports
#57Earlier quoted context omitted.
I just like knowing I have the trait for smelling asparagus in urine.
This doesn't seem like something you'd need a genetic test to determine.
Re: 23andMe meets FDA standards, adds back wellness reports
#58Man, why is it so expensive? To test my wife and I would be nearly $400. I mean sure, it might help me be able to pre-treat any known trait based disease but still.. If all they are doing is running some DNA through a database, seems like the cost should getting lower, not higher.
While I could never bring myself to spend the $199, I was a very early adopter when it went on sale for DNA day (maybe the first DNA day sale), and the rest of my family bought the next time it went on sale for DNA day a year later. Now that medical results are back, I think it is worth either price, particularly if you have any concerns about genetic health issues being passed down to you.
In my case, my father was schizophrenic (and a couple of other relatives on the same side of the family likely suffered from undiagnosed mental illness based on what I know of their behavior and the details of their violent deaths), so I was more than a little curious about whether I had any of the genetic hints that I might suffer the same fate. I don't, and knowing that I don't have the couple of markers known to 23andme was worth at least $99.
A few years after we all signed up for 23andme, my father passed away of pancreatic cancer, which can also be a genetic condition, and so I was able to check for the risk factors that are known (though my father also lacked those markers, so it's either a marker that is unknown to 23andme, or he was not genetically predisposed to pancreatic cancer in his case). That was, again, worth at least $99, to me.
I know in either case, the ability of 23andme to predict those diseases is low, and it shouldn't replace hands-on medical care and paying attention to warnings signs, but it does provide some predictive power. And, for a while they were doing original research (polling their customers and comparing data to produce reports), which was really cool and fun to see happening. I don't think they're still doing that, maybe because of the FDA ruling.
When the medical stuff went away, I stopped recommending 23andme to friends and family, as it no longer held any interest for me. The family tree functionality is neat, I guess, but I'm not Mormon, and don't have a huge amount of interest in whether I'm related to somebody interesting 200 years ago (I'm probably not; I come from very poor white trash stock).
In short, the fact that we're arguing over whether a genetic profile is expensive at $199 or at $99 is a laughable first world problem. I'd like it if more of the world could afford it, and my signing up early was part of my encouragement for that to happen; I want it to be possible for everyone to look at their genetic predispositions and such, and take some of their medical care into their own hands with more informed choices. So, I opted in early. I would have bought eventually at $199, if they hadn't ever offered the $99 deal.
But, I too, would like to see it getting cheaper. It's been many years now, since I bought in at $99. At some point, they've gotta be thinking in terms of making it more accessible to more people. There are huge swaths of people for whom $199 is not chump change.
Re: 23andMe meets FDA standards, adds back wellness reports
#59also, I don't trust them with my DNA data anymore.
Re: 23andMe meets FDA standards, adds back wellness reports
#60Man, why is it so expensive? To test my wife and I would be nearly $400. I mean sure, it might help me be able to pre-treat any known trait based disease but still.. If all they are doing is running some DNA through a database, seems like the cost should getting lower, not higher.