4 ms·

> Lack of oversight > Despite the popularity of ancestry testing, there is absolutely no government or professional oversight of the industry to ensure the val

> Lack of oversight > Despite the popularity of ancestry testing, there is absolutely no government or professional oversight of the industry to ensure the validity of the results. > It's a situation Gravel finds troubling. What is up with this incessant clamoring for a nanny to supervise every little thing? This is published on a page where, thanks to "oversight", I have to click a little spam box warning that this page, like every other damn website on the internet, uses cookies. No thank you. I really don't want to pay more taxes for the Central Bureau of Making Sure You Know You Might Be 7% Less Eastern European than Your DNA Test Indicates.

panopticon 8y ago
That's overly reductive. There are people making lifestyle changes and healthcare decisions in reaction to the results of their DNA test, so the accuracy of these tests may be more important than "woops, we placed you in the wrong European ethnic group". And I guess we remove all oversight now because of a bad example? Pack it in, FDA. We're done monitoring food safety thanks to cookie banners.
- dahfizz 8y ago
  You're being equally reductive. Obviously all of this exists on a spectrum. Most reasonable people would agree that the FDA is a net positive. Most reasonable people would agree that the government monitoring every private conversation happening in the country and jailing everyone who tells a lie would be a net negative. The happy medium for government checks on behavior is somewhere in the middle. Your parent makes the argument, very reasonably imo, that the overhead and cost of regulating these types of company's results are not worth the upside. People make lifestyle choices based on things they hear from palm readers - we don't use the government to regulate and test the validity of psychics. I think this falls into the same category.
  - panopticon 8y ago
    > The happy medium for government checks on behavior is somewhere in the middle. That was my point. > Your parent makes the argument, very reasonably imo, that the overhead and cost of regulating these types of company's results are not worth the upside. I think we read different comments; all I got was a snarky condemnation of government oversight.
  - waterhouse 8y ago
    > Most reasonable people would agree that the FDA is a net positive. A 1974 study by University of Chicago economist Sam Peltzman concluded that since 1962 the new rules had reduced the rate of introduction of effective new drugs significantly—from an average of forty-three annually in the decade before the amendments to just sixteen annually in the ten years afterward. ... The severest criticism leveled at the drug lag is that without access to a drug available elsewhere, seriously ill patients will suffer or even die. Peltzman raised the subject in his 1974 study. He noted pharmacologist William Wardell's estimate that because the relatively safe hypnotic drug nitrazepam was not cleared for use in the United States until 1971, five years after it was available in Britain, more than 3,700 Americans may have died from less safe sedatives and hypnotics. After earning the Nobel Prize for chemistry in 1988, U.S. drug researcher George Hitchings of Burroughs Wellcome Company said of an antileukemia drug he helped develop before the 1962 amendments: "We went from synthesis to the commercial drug in three years. That is absolutely impossible today." http://www.econlib.org/library/Enc1/DrugLag.html http://www.econlib.org/library/Enc1/DrugLag.html At this rate, the benefits of FDA regulation relative to that in foreign countries could reasonably be put at some 5,000 casualties per decade, or 10,000 per decade for worst-case scenarios. In comparison, it has been argued above that the cost of FDA delay can be estimated at anywhere from 21,000 to 120,000 lives per decade. These figures would seem to support the conclusion that the costs of post—1962 regulation outweigh benefits by a wide margin, similar to Peltzman's results of a 4:1 cost-benefit ratio for the 1962 amendments. "The Safety and Efficacy of New Drug Approval", https://pdfs.semanticscholar.org/feb9/53ab293f24a14b3b3d4b748281420099b4b1.pdf https://pdfs.semanticscholar.org/feb9/53ab293f24a14b3b3d4b74...
- hatchnyc 8y ago
  This is the product they are offering, they're telling you which ethnic groups you match, this is what is being discussed, this is what is being criticized as inaccurate. What is being proposed here here is someone from the government to step in and look over their shoulder and make sure they approve of the methodology being used to generate the results. If a company is making health claims there's already abundant regulation in place to prevent you from making unfounded statements. If you are making health decisions based on an Ancestry DNA test without consulting a doctor, you're clearly on your own.
- skwb 8y ago
  Well let us not forget that not too long ago 23 and Me swayed a little too far into this area with warfarin sensitivity (circa 2014 I think). https://www.fda.gov/ICECI/EnforcementActions/WarningLetters/ucm376296.htm https://www.fda.gov/ICECI/EnforcementActions/WarningLetters/...
- gjs278 8y ago
  anyone who changes their lifestyle as the result of a faulty, voluntary DNA test deserves whatever consequences that happen
- buboard 8y ago
  they can't offer health results at all in most of europe and other countries. I don't think that's fair either, why is my government trying to protect me from learning anything about my genotype? Especially considering european countries that have socialized healthcare (and thus healthcare costs cannot be affected by letting this info out). This legislation does not make sense. https://int.customercare.23andme.com/hc/en-us/articles/217696258-Will-I-receive-health-reports- https://int.customercare.23andme.com/hc/en-us/articles/21769...
Florin_Andrei 8y ago
What you call "nanny" others think of as civilization. But if you want to experience complete freedom, you can always go out there in the boondocks, dance with the wolves. Let that experience teach you the value and importance of the "nanny".
- dymk 8y ago
  Fill me in on what value you see on having taxpayer money go towards making sure novelty DNA tests are "regulated" (and what could you even meaningfully regulate?)
  - torstenvl 8y ago
    This is what's known as a compound question, and it's almost like a way of straw-manning someone. GP didn't say he wants to regulate "novelty" DNA tests. That's the spin you're putting on his position, and you've asked your question in a way that he can't answer it without tacitly approving of your spin. It's like the classic "When did you stop beating your wife?" Are these tests just novelty tests? Are they intended to be? Is it clearly communicated to consumers that they are just novelty tests? If they are just novelty tests, but they're not being upfront about that when they take consumers' money, is that acceptable public behavior? If that's not acceptable behavior, what is the right social response? That's the point in the discussion where GP appears to be. If these are novelty tests, and are being marketed as such, would you mind linking to a page on, say, 23andMe's website that describes them as such? If not - if, in your own words, these are "novelty" tests but the companies involved aren't being forthright about that - do you think a government response is so inappropriate as to dismiss it out of hand?
  - drb91 8y ago
    Well, you could mandate that they be called novelty tests.
namirez 8y ago
>> I really don't want to pay more taxes for the Central Bureau of Making Sure You Know You Might Be 7% Less Eastern European than Your DNA Test Indicates. I'm not sure if you're serious, but 23andMe also offers tests for genetic risk factors of some serious diseases. I don't think people can verify the accuracy of these tests in their kitchen.
skwb 8y ago
> What is up with this incessant clamoring for a nanny to supervise every little thing? The incessant clamoring of these companies to sell themselves as a medical device platform. Snark aside, it's fine that they have things set up the way they do for ancestry reporting. A couple of percentages here or there do not make a lot of difference when you are using it in a recreational use case. When you start getting into reporting potential medical associations with SNP variants which could affect clinical treatment decisions, it stats to matter a lot.
gameswithgo 8y ago
>What is up with this incessant clamoring for a nanny to supervise every little thing? It is because corporations keep lying and behaving horribly.
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panopticon 8y ago

That's overly reductive. There are people making lifestyle changes and healthcare decisions in reaction to the results of their DNA test, so the accuracy of these tests may be more important than "woops, we placed you in the wrong European ethnic group". And I guess we remove all oversight now because of a bad example? Pack it in, FDA. We're done monitoring food safety thanks to cookie banners.

dahfizz 8y ago
You're being equally reductive. Obviously all of this exists on a spectrum. Most reasonable people would agree that the FDA is a net positive. Most reasonable people would agree that the government monitoring every private conversation happening in the country and jailing everyone who tells a lie would be a net negative. The happy medium for government checks on behavior is somewhere in the middle. Your parent makes the argument, very reasonably imo, that the overhead and cost of regulating these types of company's results are not worth the upside. People make lifestyle choices based on things they hear from palm readers - we don't use the government to regulate and test the validity of psychics. I think this falls into the same category.
- panopticon 8y ago
  > The happy medium for government checks on behavior is somewhere in the middle. That was my point. > Your parent makes the argument, very reasonably imo, that the overhead and cost of regulating these types of company's results are not worth the upside. I think we read different comments; all I got was a snarky condemnation of government oversight.
- waterhouse 8y ago
  > Most reasonable people would agree that the FDA is a net positive. A 1974 study by University of Chicago economist Sam Peltzman concluded that since 1962 the new rules had reduced the rate of introduction of effective new drugs significantly—from an average of forty-three annually in the decade before the amendments to just sixteen annually in the ten years afterward. ... The severest criticism leveled at the drug lag is that without access to a drug available elsewhere, seriously ill patients will suffer or even die. Peltzman raised the subject in his 1974 study. He noted pharmacologist William Wardell's estimate that because the relatively safe hypnotic drug nitrazepam was not cleared for use in the United States until 1971, five years after it was available in Britain, more than 3,700 Americans may have died from less safe sedatives and hypnotics. After earning the Nobel Prize for chemistry in 1988, U.S. drug researcher George Hitchings of Burroughs Wellcome Company said of an antileukemia drug he helped develop before the 1962 amendments: "We went from synthesis to the commercial drug in three years. That is absolutely impossible today." http://www.econlib.org/library/Enc1/DrugLag.html http://www.econlib.org/library/Enc1/DrugLag.html At this rate, the benefits of FDA regulation relative to that in foreign countries could reasonably be put at some 5,000 casualties per decade, or 10,000 per decade for worst-case scenarios. In comparison, it has been argued above that the cost of FDA delay can be estimated at anywhere from 21,000 to 120,000 lives per decade. These figures would seem to support the conclusion that the costs of post—1962 regulation outweigh benefits by a wide margin, similar to Peltzman's results of a 4:1 cost-benefit ratio for the 1962 amendments. "The Safety and Efficacy of New Drug Approval", https://pdfs.semanticscholar.org/feb9/53ab293f24a14b3b3d4b748281420099b4b1.pdf https://pdfs.semanticscholar.org/feb9/53ab293f24a14b3b3d4b74...
hatchnyc 8y ago
This is the product they are offering, they're telling you which ethnic groups you match, this is what is being discussed, this is what is being criticized as inaccurate. What is being proposed here here is someone from the government to step in and look over their shoulder and make sure they approve of the methodology being used to generate the results. If a company is making health claims there's already abundant regulation in place to prevent you from making unfounded statements. If you are making health decisions based on an Ancestry DNA test without consulting a doctor, you're clearly on your own.
skwb 8y ago
Well let us not forget that not too long ago 23 and Me swayed a little too far into this area with warfarin sensitivity (circa 2014 I think). https://www.fda.gov/ICECI/EnforcementActions/WarningLetters/ucm376296.htm https://www.fda.gov/ICECI/EnforcementActions/WarningLetters/...
gjs278 8y ago
anyone who changes their lifestyle as the result of a faulty, voluntary DNA test deserves whatever consequences that happen
buboard 8y ago
they can't offer health results at all in most of europe and other countries. I don't think that's fair either, why is my government trying to protect me from learning anything about my genotype? Especially considering european countries that have socialized healthcare (and thus healthcare costs cannot be affected by letting this info out). This legislation does not make sense. https://int.customercare.23andme.com/hc/en-us/articles/217696258-Will-I-receive-health-reports- https://int.customercare.23andme.com/hc/en-us/articles/21769...

Florin_Andrei 8y ago

What you call "nanny" others think of as civilization. But if you want to experience complete freedom, you can always go out there in the boondocks, dance with the wolves. Let that experience teach you the value and importance of the "nanny".

dymk 8y ago
Fill me in on what value you see on having taxpayer money go towards making sure novelty DNA tests are "regulated" (and what could you even meaningfully regulate?)
- torstenvl 8y ago
  This is what's known as a compound question, and it's almost like a way of straw-manning someone. GP didn't say he wants to regulate "novelty" DNA tests. That's the spin you're putting on his position, and you've asked your question in a way that he can't answer it without tacitly approving of your spin. It's like the classic "When did you stop beating your wife?" Are these tests just novelty tests? Are they intended to be? Is it clearly communicated to consumers that they are just novelty tests? If they are just novelty tests, but they're not being upfront about that when they take consumers' money, is that acceptable public behavior? If that's not acceptable behavior, what is the right social response? That's the point in the discussion where GP appears to be. If these are novelty tests, and are being marketed as such, would you mind linking to a page on, say, 23andMe's website that describes them as such? If not - if, in your own words, these are "novelty" tests but the companies involved aren't being forthright about that - do you think a government response is so inappropriate as to dismiss it out of hand?
- drb91 8y ago
  Well, you could mandate that they be called novelty tests.

namirez 8y ago

>> I really don't want to pay more taxes for the Central Bureau of Making Sure You Know You Might Be 7% Less Eastern European than Your DNA Test Indicates. I'm not sure if you're serious, but 23andMe also offers tests for genetic risk factors of some serious diseases. I don't think people can verify the accuracy of these tests in their kitchen.

skwb 8y ago

> What is up with this incessant clamoring for a nanny to supervise every little thing? The incessant clamoring of these companies to sell themselves as a medical device platform. Snark aside, it's fine that they have things set up the way they do for ancestry reporting. A couple of percentages here or there do not make a lot of difference when you are using it in a recreational use case. When you start getting into reporting potential medical associations with SNP variants which could affect clinical treatment decisions, it stats to matter a lot.

gameswithgo 8y ago

>What is up with this incessant clamoring for a nanny to supervise every little thing? It is because corporations keep lying and behaving horribly.

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