> I really liked the old 23andme and was an early customer. I felt it did a good job of presenting scientific conjecture with notes on confidence and how to use the data. It gave me some encouragement to cut down on my caffeine consumption, and to exercise more to try to influence specific gene expression, and if I was a carrier for a serious genetic disease, I definitely would want access to that information.
So I wonder what exactly in the 23andme data made you do these things.
I don't know about your caffeine intake, but if you drink a lot then I could've told you to limit it without any genetic data. And I certainly could've told you to exercise more.
Don't get me wrong: I'm not opposed to genetic testing. If people want to know their genes, ok. (I have done a 23andme test myself.)
But realistically there isn't a lot of data that is useful for lifestyle changes. The idea is "If I have disease X risk in my genes I can do something against it". However "something" usually means "exercise, eat healthy, don't smoke, avoid injuries, do all the boring stuff everybody knows". You don't need a genetic test to tell you to go to the gym for your health.
Sure. Everyone knows they should exercise more, but what tips the balance in general, and what tips it on a day when you feel like crap and would rather surf Hacker News or go back to bed? Friends or family you exercise with, a loved one getting sick, a realization that your body doesn't work as it used to when you throw your back out, a gym opens up near your house? Which straw strengthens the camel's resolve?
I wouldn't say that 23andme data was the only or even main factor, but for someone with a scientific bent, having read a few studies that showed an x% improvement in odds on avoiding a disease that I didn't want in populations with specific genes that I shared provides an extra bit of motivation on some days. I already exercised, but progress in health isn't binary, it's about frequency and repeated effort. Miss a significant percentage less workouts over a few years and the $99 on genetic testing easily pays for itself.
There have been people with schizophrenia on both sides of my family; my dad was schizophrenic. I really wanted to know if I have any genes that indicate an increased risk of schizophrenia.
I signed up for 23andme on the first DNA Day sale and signed my parents up on the second or third one. They didn't have a lot about schizophrenia in their health data early on but added a few markers later. I don't have any of them (but my dad didn't either, so there's probably something missing from the picture). When my dad passed away a few years ago from pancreatic cancer, I wanted to know about that, too. Early detection is the only thing that can help with pancreatic cancer. Again, no markers for increased risk (and again, my dad didn't have any significant risk markers either, the science is still very new).
But, for me, part of the value lies in the original science they're doing. Even if they don't have useful answers for me today, I would do the questionnaires and such in hopes that it'd help somebody else later. Genetic prediction of diseases can be hugely valuable.
Sure, there's a lot of things that the standard advice works for. But, schizophrenia? Sometimes, by the time it is diagnosable the person is difficult to reach with treatment. Maybe knowing it's potentially looming will make them more likely to seek treatment at the first signs of trouble, rather than after the point where it is difficult to determine what's real. Likewise, pancreatic cancer...there are tests for it (not good ones, but if they know what they're looking for, they might catch it early), but they're not part of a normal checkup. But, if you know you've got family members who had it and have the genetic markers for it, maybe you pay for, and deal with the invasiveness, of the extra tests every year or two, in hopes that if you do get it you'll catch it early enough to have a hope of surviving more than a year.
"I really wanted to know if I have any genes that indicate an increased risk of schizophrenia."
So does everyone else. Unfortunately, the best science out there is insufficient to give you an answer. If 23andMe were doing that, they would have deserved to have their wings clipped. Merely reporting the markers would be irresponsible -- there are hundreds! Interpreting those markers is, at best, an unclear process.
The GGP comment is ironic, because the problems they are complaining about (weirdly precise ancestry claims) are exactly what happened with much of what 23andMe used to report -- exaggeration of weak statistical signals. Ancestry is something more understandable to laypeople than relative risk factors for rare diseases, so folks can more easily understand the absurdity of the claims.
Sure, it's early. I know it and knew it when I signed up. I was not shocked to find out that the markers they'd identified as being associated with schizophrenia aren't a complete picture or a way to detect schizophrenia. And, I also know that genes aren't the only thing that determines whether one will suffer from schizophrenia or pancreatic cancer or most other diseases (as far as we know). I think they always presented the information without being misleading (though the government disagreed).
But, I also know that genetic markers for some diseases are a real thing and they are useful predictors of disease in some cases. And, the number of markers that have predictive applications are increasing all the time, as research gets done.
I don't expect 23andme to replace a doctor or a psychologist. But, I took a little bit of comfort in seeing that the markers that are thought to be predictive (even if mildly so) aren't present in my genes. I don't think they ever presented them as being a way to diagnose any condition. It was always just a fun thing you can do with your own genetic data, and maybe help move research in the field forward by answering questionnaires now and then.
I enjoyed playing with 23andme when it was focused on health-related data, less so now that it's focused on ancestry. I haven't logged in for well over a year.
I mean, I was amused to debunk my family's native American myth (which I think many American families have, for some reason), and I was also able to rule out my theory that the broad noses and dark skin that run in my family came from black folks somewhere in the family tree (that surprised me, I actually expected we had some African lineage, despite no one ever mentioning it...I assumed that's why some old folks in the family claimed native ancestry, to explain away those features). So, I guess the ancestry thing is reasonably amusing, too, but I probably wouldn't have signed up just for that, since I've always known I'm an American mutt of poor white trash lineage.
"I was not shocked to find out that the markers they'd identified as being associated with schizophrenia aren't a complete picture or a way to detect schizophrenia. And, I also know that genes aren't the only thing that determines whether one will suffer from schizophrenia or pancreatic cancer or most other diseases (as far as we know). I think they always presented the information without being misleading (though the government disagreed)."
They were completely misleading (at least, the reports I saw were misleading). Most of the stuff they reported was taken wildly out of context -- if it weren't, a lay audience couldn't possibly understand it!
But even ignoring the fact that you don't know the field (and therefore cannot possibly evaluate their claims, aside from general skepticism), a big part of the reason that you shouldn't be doing your own genetic analysis is that a lot of science is crap. Even "good" science is crap. So it's not that the markers "aren't a complete picture" -- it's that they're probably just noise, and you can't possibly know, unless the test passes all of the hurdles to get certified. You need the system, because the system is the only thing that validates results over time. Strength through redundancy.
Also, for whatever it's worth: be very careful with correlating anything to their ancestry calculations. Those are pretty much crap, too.
Now, you could say "everyone should exercise", and maybe so. But any tangible evidence for the long-term benefits helps. Sure, there's general evidence of benefits, but in my (limited, dated) exposure to the literature, general exercise research is not necessarily compelling enough, especially given the difficulties in pulling out correlations between exercisers and other associated activities or traits.
I find exercise boring, and I'm definitely looking to minimize exercise necessary to maximize its benefits.
By the way, the genetic research on predisposition to side effects to drugs and such is also extremely compelling. It's sad that the medical world is still so far from even trying to do precision medicine.
So I wonder what exactly in the 23andme data made you do these things. I don't know about your caffeine intake, but if you drink a lot then I could've told you to limit it without any genetic data. And I certainly could've told you to exercise more.
Don't get me wrong: I'm not opposed to genetic testing. If people want to know their genes, ok. (I have done a 23andme test myself.)
But realistically there isn't a lot of data that is useful for lifestyle changes. The idea is "If I have disease X risk in my genes I can do something against it". However "something" usually means "exercise, eat healthy, don't smoke, avoid injuries, do all the boring stuff everybody knows". You don't need a genetic test to tell you to go to the gym for your health.