5 ms·

I'm a 23andme customer (post-DNA day) and after seeing the DNA mixup[1] and watching the youtube video released by the subcommittee on hearings and oversite[2],

by roder 16y ago

I'm a 23andme customer (post-DNA day) and after seeing the DNA mixup[1] and watching the youtube video released by the subcommittee on hearings and oversite[2], I am becoming increasingly weary of consumer genetic testing. I am glad to read that 23andme support regulation, because ultimately that is what should be required. Much like the regulation that HIPAA provides, DNA information should be federally protected and regulated. [1] http://www.switched.com/2010/06/08/23andmes-dna-mixup-leaves-96-customers-with-wrong-test-results/ http://www.switched.com/2010/06/08/23andmes-dna-mixup-leaves... [2] http://bit.ly/9MrBpe http://bit.ly/9MrBpe

jamesbritt 16y ago
I'd prefer to see Consumer Reports handle this instead of anything like the FDA. I'm an adult; I can decide for myself what to make of the information I obtain.
- roder 16y ago
  I am also an adult, I also should be able to decide what I want to do with the data. However, when I send out my DNA and receive that data, I would hope that the DNA information should adhere to a scientific and privacy standard respectively. Of course, one could say that the free market could work this all out and everything will be just fine... On that note, please see October 2008 for reference.
- timr 16y ago
  "I'd prefer to see Consumer Reports handle this instead of anything like the FDA. I'm an adult; I can decide for myself what to make of the information I obtain." I realize that this isn't going to be a popular opinion around these parts, but no, you can't. Smart as you may be, you're utterly ignorant when it comes to this stuff, and you haven't got a chance of beginning to understand the intricacies that go into interpreting the data that these companies are giving you. More importantly, you don't have time to understand. I have a Ph.D. in Biochemistry, and for the most part, I couldn't tell you whether the data in a 23andMe report is meaningful or utter garbage. I perhaps have enough knowledge to go out and find the necessary papers, read and interpret them in light of the literature on genomic analysis, and evaluate risks...but I wouldn't begin to have the time to do it properly for all of the data in a given report. No offense, but you haven't got a prayer. These companies could be fabricating results whole-cloth, and you'd have no way of knowing it. Most importantly, because there's no regulation of the methods used by these companies, neither you nor I have any way of knowing what methods they're using, whether the techniques are precise or accurate, or even if the labwork is done by skilled technicians in a sterile environment. Without these assurances, even if you could understand the data, you would have no guarantee that the data was even gathered correctly. There are some domains where expertise matters more than anything else, and no amount of brainpower makes up for the instincts provided by years of training and experience. This is one such area.
  - moultano 16y ago
    And for some reason you think this is different from any other field? I don't have a prayer when I walk into a car dealership of figuring out whether a car I'm thinking of buying will function properly. There are too many parts for me to conceivably understand. It's very complicated. Thankfully, there are many experts and expert organizations that I trust to make this determination for me. I defer to their authority. How is this any different? The market seems to handle this just fine.
    - jballanc 16y ago
      > And for some reason you think this is different from any other field? Yes, actually. If we must really flog a tortured analogy: This is not like going to your local mechanic friend and asking for car buying advice. It's more like this guy named Karl Benz comes and tells you he's got a great new invention called the internal combustion engine and you should definitely buy it. So you go to your friend the steam engine mechanic and ask him for advice. Sure, he understands the principles, maybe, but this is something completely new! If you must appeal to authority, consider you have two experts in this thread telling you that even they think the topic is too complex to draw useful conclusions. If you don't trust random people on the internet (not that I blame you), then go to the source. From the article: There are valid scientific reasons for different estimates from different companies, such as: companies employ slightly different statistical models for making risk estimates; companies establish different criteria for the inclusion of associations in their reports; new associations are being discovered at a faster rate than companies’ development cycles; companies may test for an imperfectly overlapping set of genetic variants for reasons including the ability of different genotyping technologies to assay certain variants. To be clear, this is not a case of Car and Driver favoring German engineering but JD Powers always skewing towards American manufacturers (completely contrived example, BTW). In this case the statistical models are the science, not just some interpretation of the science. This field is young. Too young. This money and effort would be better spent on basic research. > The market seems to handle this just fine. No, the market gives us homeopathy and snake-oil salesmen. Humans, especially when confronted with areas in which they are not knowledgeable, can be surprisingly irrational!

by roder 16y ago

jamesbritt 16y ago

I'd prefer to see Consumer Reports handle this instead of anything like the FDA. I'm an adult; I can decide for myself what to make of the information I obtain.

roder 16y ago
I am also an adult, I also should be able to decide what I want to do with the data. However, when I send out my DNA and receive that data, I would hope that the DNA information should adhere to a scientific and privacy standard respectively. Of course, one could say that the free market could work this all out and everything will be just fine... On that note, please see October 2008 for reference.
timr 16y ago
"I'd prefer to see Consumer Reports handle this instead of anything like the FDA. I'm an adult; I can decide for myself what to make of the information I obtain." I realize that this isn't going to be a popular opinion around these parts, but no, you can't. Smart as you may be, you're utterly ignorant when it comes to this stuff, and you haven't got a chance of beginning to understand the intricacies that go into interpreting the data that these companies are giving you. More importantly, you don't have time to understand. I have a Ph.D. in Biochemistry, and for the most part, I couldn't tell you whether the data in a 23andMe report is meaningful or utter garbage. I perhaps have enough knowledge to go out and find the necessary papers, read and interpret them in light of the literature on genomic analysis, and evaluate risks...but I wouldn't begin to have the time to do it properly for all of the data in a given report. No offense, but you haven't got a prayer. These companies could be fabricating results whole-cloth, and you'd have no way of knowing it. Most importantly, because there's no regulation of the methods used by these companies, neither you nor I have any way of knowing what methods they're using, whether the techniques are precise or accurate, or even if the labwork is done by skilled technicians in a sterile environment. Without these assurances, even if you could understand the data, you would have no guarantee that the data was even gathered correctly. There are some domains where expertise matters more than anything else, and no amount of brainpower makes up for the instincts provided by years of training and experience. This is one such area.
- moultano 16y ago
  And for some reason you think this is different from any other field? I don't have a prayer when I walk into a car dealership of figuring out whether a car I'm thinking of buying will function properly. There are too many parts for me to conceivably understand. It's very complicated. Thankfully, there are many experts and expert organizations that I trust to make this determination for me. I defer to their authority. How is this any different? The market seems to handle this just fine.
  - jballanc 16y ago
    > And for some reason you think this is different from any other field? Yes, actually. If we must really flog a tortured analogy: This is not like going to your local mechanic friend and asking for car buying advice. It's more like this guy named Karl Benz comes and tells you he's got a great new invention called the internal combustion engine and you should definitely buy it. So you go to your friend the steam engine mechanic and ask him for advice. Sure, he understands the principles, maybe, but this is something completely new! If you must appeal to authority, consider you have two experts in this thread telling you that even they think the topic is too complex to draw useful conclusions. If you don't trust random people on the internet (not that I blame you), then go to the source. From the article: There are valid scientific reasons for different estimates from different companies, such as: companies employ slightly different statistical models for making risk estimates; companies establish different criteria for the inclusion of associations in their reports; new associations are being discovered at a faster rate than companies’ development cycles; companies may test for an imperfectly overlapping set of genetic variants for reasons including the ability of different genotyping technologies to assay certain variants. To be clear, this is not a case of Car and Driver favoring German engineering but JD Powers always skewing towards American manufacturers (completely contrived example, BTW). In this case the statistical models are the science, not just some interpretation of the science. This field is young. Too young. This money and effort would be better spent on basic research. > The market seems to handle this just fine. No, the market gives us homeopathy and snake-oil salesmen. Humans, especially when confronted with areas in which they are not knowledgeable, can be surprisingly irrational!