5 ms·

> To create a recurring revenue stream from the tests, Wojcicki has pivoted to subscriptions. As media companies launched streaming “+” channels, Wojcicki rolle

by Shank 3y ago

> To create a recurring revenue stream from the tests, Wojcicki has pivoted to subscriptions. As media companies launched streaming “+” channels, Wojcicki rolled out 23andMe+, offering personalized health reports, lifestyle advice and unspecified “new reports and features as discoveries are made” for an initial $229, with annual renewals of $69. I was a heavy believer of 23andMe until this point. I answered all of the available research questions, which was a thing that took absolutely hours and was filled with semi-invasive medical questions. I did this under the premise that I would hopefully be helping research and I felt really rewarded having completed all of them. Then, they dropped the + bombshell and I felt really rugpulled. I paid them for genotyping on their v4 and v5 platforms -- so I paid twice, I referred friends, I bought people kits, I helped research...and now I was being asked to pay a subscription for what I was promised to begin with? Eesh. I think the fundamental issue is that when the FDA stepped in and told 23andMe to cut back on their reporting that they really hit a roadblock. Promethease always gave better results than 23andMe, but when that happened it commoditized genotyping fully. Just download your data from any provider and use a third-party tool and you're set. Fast forward to 2024 and they're stuck with a platform that's semi-limited and they haven't delivered on any of the research deliverables that many people wanted in the first place. The idea of getting new genetic reports monthly was appealing and simply never materialized. It's no surprise people aren't hot on this as a business -- but what is surprising is that they were completely passed by startups like Nebula Genomics in offering whole-genome sequencing and competitive data access. I think the stored data they have is their only advantage, but they don't seem to know how to leverage it.

hasoleju 3y ago
> think the stored data they have is their only advantage, but they don't seem to know how to leverage it. I really wonder what happens to that data if they get acquired or shut down. The possible new owner of the data might have a completely different business case in mind. This scenario is something you usually don't consider when you give your data to a company that you trust at the moment.
- babypuncher 3y ago
  Like selling it to insurance companies who can use the data to deny coverage.
  - mminer237 3y ago
    This is illegal, at least in the US.
    - carbocation 3y ago
      Illegal for health insurance companies. But not so for life insurance, or disability insurance or long-term care.
      - rockinghigh 3y ago
        It's illegal in some US states like California. The California Genetic Information Privacy Act prohibits these companies from disclosing a consumer’s genetic data to any entity that is responsible for administering or making decisions regarding health insurance, life insurance, long-term care insurance, disability insurance.
      - astura 3y ago
        If they wanted to use that information for underwriting they'd just make getting a genetic test a prereq before underwriting the policy.
        Dylan16807 3y ago
        And if they wanted easy cash they'd "just" make you pay $500 as a signup fee. Which is to say: No they wouldn't just do that, it would cut their business too much despite being a way to make more money per client. But getting it from a company that already has it avoids that downside.
- sorokod 3y ago
  No need to wonder, imagine the worst case scenario and assign it a non zero probability. This scenario is something you usually don't consider when you give your data to a company that you trust at the moment. Why would you not consider it?
shmatt 3y ago
Promethease is why i initially did 23andme, and it was beyond worth it for me personally. But for the same reason I'm just a one time customer, all I needed was for 23andme to give me a very expensive hospital test at a 95% discount, and I didn't need them anumore
- yeahwhatever10 3y ago
  Can you explain how you got a 95% discount?
  - rockinghigh 3y ago
    They are comparing with a full DNA sequencing when going through a hospital.
shellfishgene 3y ago
Is there a Promethease equivalent for ancestry data?
- mfld 3y ago
  yTree would qualify: Small one-time fee, no subscription needed, simple but good results.
- beaugunderson 3y ago
  there's this for example, not as open as Promethease but similar in that it's "bring us your data and we'll give you new analysis on it": https://yourdnaportal.com/advanced_ancestry_analysis https://yourdnaportal.com/advanced_ancestry_analysis
belval 3y ago
As someone who paid for 23andme+, it was pretty much a scam anyway, I got maybe 4-5 more reports over the year, all of which were for random popular ailments like "Anxiety" where the link between your genes and the disease(?) are pretty dubious in the literature and the takeaway was "you are 5% more likely to experience anxiety".
- astrange 3y ago
  > where the link between your genes and the disease(?) are pretty dubious in the literature This is inescapable; genetics usually can't show causation, for instance because you can't do an experiment where you change someone's genes. Geneticists seem to deal with this by using statistics like GWAS that are obviously just correlation, adding a sentence that correlation doesn't show causation, and then just proceeding and pretending like it does.
  - belval 3y ago
    Sure, perhaps that was a bit too succint. What I mean is that, as a customer of 23andme, I'd much rather know about some known genetic disease that I may or may not have than about wide-ranging things that affect everyone like stress and anxiety. It's just not as serious. 23andme went with the "only give very limited information" which I respect but is ultimately pretty much useless compared to just running your data against dbSNP and telling me that I have this or that marker for this or that disease backed by this or that paper.
  - Dylan16807 3y ago
    Only showing correlation is one thing, but if the correlations themselves are barely noticable then that's a big problem for making a useful report. Though if you find whatever gene is most correlated with something, what are the options for it not to be causation? If the chance of causation is high enough, it makes sense to proceed as if the risk is real.
    - astrange 3y ago
      When I said correlation isn't causation I meant it. Neither high nor low correlation is evidence for causation. There's a more advanced form of being bad at this where you think you can show causation by controlling for everything in the environment. This is also wrong; it produces something called collider bias. > Though if you find whatever gene is most correlated with something, what are the options for it not to be causation? 1. It's a coincidence and it's never causal. Imagine an OSS project releases a bugfix and you diff the old and new versions. (This is basically GWAS.) The bugfix part of the diff caused it to be fixed. The updates to the copyright dates or changelogs didn't. 2. It's causal, but the causal chain involves a specific environmental factor, and we should change that instead. For instance, you can say every human has a genetic disease that prevents them from producing their own vitamin C, which most other mammals can do. But instead of calling scurvy a genetic disease we just eat fruits and vegetables.
BasilPH 3y ago
> As an added security measure, we have temporarily disabled the ability to download your raw genetic data. We hope to re-enable this ability soon, and we appreciate your patience. Apparently 23andMe doesn't let you download the data anymore, I just tried. I wanted to give Promethease a go, seems interesting.
- sib 3y ago
  Wouldn't laws in certain jurisdictions require them to allow you to download your data?
- suslik 3y ago
  I couldn't find it either. Fortunately, I downloaded the genotypes in July.
  - obruchez 3y ago
    "We have temporarily disabled raw data download as an additional precaution to protect your privacy. We don't currently have a timeline for when this feature will become available but will keep customers informed of any changes."

by Shank 3y ago

hasoleju 3y ago

> think the stored data they have is their only advantage, but they don't seem to know how to leverage it. I really wonder what happens to that data if they get acquired or shut down. The possible new owner of the data might have a completely different business case in mind. This scenario is something you usually don't consider when you give your data to a company that you trust at the moment.

babypuncher 3y ago
Like selling it to insurance companies who can use the data to deny coverage.
- mminer237 3y ago
  This is illegal, at least in the US.
  - carbocation 3y ago
    Illegal for health insurance companies. But not so for life insurance, or disability insurance or long-term care.
    - rockinghigh 3y ago
      It's illegal in some US states like California. The California Genetic Information Privacy Act prohibits these companies from disclosing a consumer’s genetic data to any entity that is responsible for administering or making decisions regarding health insurance, life insurance, long-term care insurance, disability insurance.
    - astura 3y ago
      If they wanted to use that information for underwriting they'd just make getting a genetic test a prereq before underwriting the policy.
      - Dylan16807 3y ago
        And if they wanted easy cash they'd "just" make you pay $500 as a signup fee. Which is to say: No they wouldn't just do that, it would cut their business too much despite being a way to make more money per client. But getting it from a company that already has it avoids that downside.
sorokod 3y ago
No need to wonder, imagine the worst case scenario and assign it a non zero probability. This scenario is something you usually don't consider when you give your data to a company that you trust at the moment. Why would you not consider it?

shmatt 3y ago

Promethease is why i initially did 23andme, and it was beyond worth it for me personally. But for the same reason I'm just a one time customer, all I needed was for 23andme to give me a very expensive hospital test at a 95% discount, and I didn't need them anumore

yeahwhatever10 3y ago
Can you explain how you got a 95% discount?
- rockinghigh 3y ago
  They are comparing with a full DNA sequencing when going through a hospital.

shellfishgene 3y ago

Is there a Promethease equivalent for ancestry data?

mfld 3y ago
yTree would qualify: Small one-time fee, no subscription needed, simple but good results.
beaugunderson 3y ago
there's this for example, not as open as Promethease but similar in that it's "bring us your data and we'll give you new analysis on it": https://yourdnaportal.com/advanced_ancestry_analysis https://yourdnaportal.com/advanced_ancestry_analysis

belval 3y ago

As someone who paid for 23andme+, it was pretty much a scam anyway, I got maybe 4-5 more reports over the year, all of which were for random popular ailments like "Anxiety" where the link between your genes and the disease(?) are pretty dubious in the literature and the takeaway was "you are 5% more likely to experience anxiety".

astrange 3y ago
> where the link between your genes and the disease(?) are pretty dubious in the literature This is inescapable; genetics usually can't show causation, for instance because you can't do an experiment where you change someone's genes. Geneticists seem to deal with this by using statistics like GWAS that are obviously just correlation, adding a sentence that correlation doesn't show causation, and then just proceeding and pretending like it does.
- belval 3y ago
  Sure, perhaps that was a bit too succint. What I mean is that, as a customer of 23andme, I'd much rather know about some known genetic disease that I may or may not have than about wide-ranging things that affect everyone like stress and anxiety. It's just not as serious. 23andme went with the "only give very limited information" which I respect but is ultimately pretty much useless compared to just running your data against dbSNP and telling me that I have this or that marker for this or that disease backed by this or that paper.
- Dylan16807 3y ago
  Only showing correlation is one thing, but if the correlations themselves are barely noticable then that's a big problem for making a useful report. Though if you find whatever gene is most correlated with something, what are the options for it not to be causation? If the chance of causation is high enough, it makes sense to proceed as if the risk is real.
  - astrange 3y ago
    When I said correlation isn't causation I meant it. Neither high nor low correlation is evidence for causation. There's a more advanced form of being bad at this where you think you can show causation by controlling for everything in the environment. This is also wrong; it produces something called collider bias. > Though if you find whatever gene is most correlated with something, what are the options for it not to be causation? 1. It's a coincidence and it's never causal. Imagine an OSS project releases a bugfix and you diff the old and new versions. (This is basically GWAS.) The bugfix part of the diff caused it to be fixed. The updates to the copyright dates or changelogs didn't. 2. It's causal, but the causal chain involves a specific environmental factor, and we should change that instead. For instance, you can say every human has a genetic disease that prevents them from producing their own vitamin C, which most other mammals can do. But instead of calling scurvy a genetic disease we just eat fruits and vegetables.

BasilPH 3y ago

> As an added security measure, we have temporarily disabled the ability to download your raw genetic data. We hope to re-enable this ability soon, and we appreciate your patience. Apparently 23andMe doesn't let you download the data anymore, I just tried. I wanted to give Promethease a go, seems interesting.

sib 3y ago
Wouldn't laws in certain jurisdictions require them to allow you to download your data?
suslik 3y ago
I couldn't find it either. Fortunately, I downloaded the genotypes in July.
- obruchez 3y ago
  "We have temporarily disabled raw data download as an additional precaution to protect your privacy. We don't currently have a timeline for when this feature will become available but will keep customers informed of any changes."