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To be honest it's amazing they are still in business. The company was originally founded on unreasonable goals in the health industry, using DNA array testing

by dekhn 3y ago

To be honest it's amazing they are still in business. The company was originally founded on unreasonable goals in the health industry, using DNA array testing to identify risky variants in individuals to help produce better treatments. It took the CEO about a decade to learn enough to acknowledge that their approach would never have achieved this, because the mapping from genome to risk/treatment is a highly complex function and their mechanism was underpowered and they also repeatedly pissed off and ignored the FDA who then shut them down for a while. The only reason they survived this was, afaict, the CEO's ability to extract money from google to keep operating. Eventually, the company found that they could do identity by descent really well, much more useful to customers than telling them their earwax properties, and their "recreational genomics" products were extremely popular- enough to sustain a service, but not really enough to sustain advanced research. They finally got some pharma to give them a bunch of money for their data (basically all the genomic and phenotype data that they collected on their users) ostensibly to do translational health research, but this has not been very productive (and seems unlikely to be truly transformative). In the meantime they have to keep runing their consumer platform and it clearly had security issues that permitted a large scale data extraction (that's on them, not the customers) and I jusrt can't see how they keep getting money to operate, because their track record in translating data to profit/medicine has been so skimpy.

myth_drannon 3y ago
All the other DNA test companies(MyHeritage, Ancestry) use DNA kits as a funnel to the more lucrative genealogy subscription services. But that market is pretty crowded and established, so 23andME is stuck in trying to sell DNA data.
- ravenstine 3y ago
  Better yet, is it at all feasible to do at home for a Hacker News type with the right equipment and not breaking the bank?
  - dekhn 3y ago
    mechanically, it's feasible. Scientifically, it's suspect.
shmatt 3y ago
It cost me about $99 to get my DNA mapped by them a decade ago. I used a 3rd party service to sync my results with SNPedia which returned a pretty cool report, at the top of the report was a very dangerous gene I was the first in my family to discover, and has since saved lives. 23andme added that gene to their reports at least 5 years if not more later My doctor scoffed at 23andme finding a dangerous genetic mutation and said its probably just a false positive. I had to spend $500 to get a single gene tested in a hospital, still came out positive. So bang for your buck that $99 was a great deal for a full mapping, it feels like most of their issue is what the government allows them to show. Im pretty sure that SNPedia syncer isn't online anymore, but that was what made 23andme a great service for me
- ramraj07 3y ago
  I'm happy that this found a dangerous mutation in your family and saved lives but what's at stake is unfortunately much larger and not worth the risk for most people IMO. You are risking the publication of the genetic makeup and vulnerabilities not just of yourself but thousands of people living today and will live for the next several generations, and to some extent in perpetuity. I don't want to condemn my family to that risk yet! I'm sincerely hoping a security first service that actually earns it's trust shows up soon!
  - shmatt 3y ago
    Is there OpSec better than my local doctor or hospital? I feel like I hear about ransomware attacks on hospitals every week. My DNA was also scanned[1] and saved by a hospital before having my first child - as most people with my heritage do. So thats 3 times in my life I did genetic testing. Which one is more prone to be hacked - Mount Sinai, LabCorp, 23andme? Who knows [1] https://womenshealth.labcorp.com/providers/carrier-screening/inheritest-panels/inheritest-500-plus-panel-disorders https://womenshealth.labcorp.com/providers/carrier-screening...
    - deleted 3y ago
      [deleted]
    - 3y ago
pphysch 3y ago
I'm surprised the health insurance industry isn't implicated here. Genome comparisons are a goldmine for creating risk models for individuals... I would even speculate that the whole thing was driven by insurance industry rather than pharma industry. "We're doing this for medicine!" looks like PR lipstick.
- dekhn 3y ago
  Why would health insurance be implicated here? They're not allowed to use this sort of data due to GINA law.
  - pphysch 3y ago
    I would be be shocked if there aren't huge loopholes in GINA or they weren't doing this under the table. Like you sprinkle some derivatives of GI into your huge model and then "our model assesses that risk XYZ is likely..." without ever mentioning GI to the customer. Our main healthcare "privacy" law in US, HIPAA, is structured to protect insurance firms' right to our private health data (while otherwise sensibly restricting access to it). It is not a given that private finance firms ought to have legally protected, virtually exclusive access to our sensitive health information, but they do in America. Facts like this make me skeptical that GINA was written and is enforced in good faith.
    - justrealist 3y ago
      > I would be be shocked if there aren't huge loopholes in GINA or they weren't doing this under the table. Sorry but you have no idea what you are talking about. Big corporations are absolutely terrified of accidentally using health data illegally, no insurance company in the US would touch this with a 10000 foot pole.
      - pphysch 3y ago
        > Big corporations are absolutely terrified of accidentally using health data illegally I am acutely aware of this, and am also aware that most "big corporations" have nothing to gain from mishandling/abusing PHI. But health insurance firms obviously do. Another notable analog is the credit reporting industry. Despite serious & repeated abuses of consumer financial privacy, these companies consistently get off with a slap on the wrist. And we're supposed to believe that their neighbors, the insurance industry, are good guys from a radically different paradigm?
justrealist 3y ago
Well the ironic part is that their SNP array now would be fairly effective because genome imputation using 1k genomes etc has gotten so good. But now WGS is cheap enough that the value prop of using imputation is getting more and more marginal.
- dekhn 3y ago
  it makes me so glad to hear that, because my first reaction (well over a decade ago) to people using arrays and imputation is: they data is there, why are you estimating it probabilistically (realistically, at the time, whole genomes cost too much, and scientists iwll always do short term probabilistic estimation to get an approximate answer quickly.
ravenstine 3y ago
It's all about branding. They got in early and really got their name out there. Everyone has heard of 23 And Me. Off the top of my head, I can't think of another brand (though I know they exist), and people I know IRL still refer to 23 And Me.
vinniepukh 3y ago
Why did the CEO extract money from specifically Google and why did Google continue funding them despite all the shortcomings?
- dekhn 3y ago
  The CEO, Anne Wojcicki, was married to Sergey Brin (founder of google): https://www.nytimes.com/2007/05/23/technology/23google.html https://www.nytimes.com/2007/05/23/technology/23google.html Her sister Susan was also an exec at Google and provided space for the company when it first got started. Sergey loaned a bunch of money to 23&me before that, and his loan was repaid when google invested (which sounds like a conflict of interest to me, but then again, Sergey is a bunch of conflict of interests). Later, GV (Google Ventures) invested more in 23&Me. At the time, the head of GV was Bill Maris, who had worked with Anne before she founded her company (and I was an advisor for GV around that time; if they'd asked me, I would have said "don't put more money in this turkey"). So basically a little family of people who wanted to see the company succeed. I think they've been given their time to succeed and at best, have reached a sort of steady state where they are not going out of business, but also aren't achieving the interesting mission they were based on.

by dekhn 3y ago

myth_drannon 3y ago

All the other DNA test companies(MyHeritage, Ancestry) use DNA kits as a funnel to the more lucrative genealogy subscription services. But that market is pretty crowded and established, so 23andME is stuck in trying to sell DNA data.

ravenstine 3y ago
Better yet, is it at all feasible to do at home for a Hacker News type with the right equipment and not breaking the bank?
- dekhn 3y ago
  mechanically, it's feasible. Scientifically, it's suspect.

shmatt 3y ago

It cost me about $99 to get my DNA mapped by them a decade ago. I used a 3rd party service to sync my results with SNPedia which returned a pretty cool report, at the top of the report was a very dangerous gene I was the first in my family to discover, and has since saved lives. 23andme added that gene to their reports at least 5 years if not more later My doctor scoffed at 23andme finding a dangerous genetic mutation and said its probably just a false positive. I had to spend $500 to get a single gene tested in a hospital, still came out positive. So bang for your buck that $99 was a great deal for a full mapping, it feels like most of their issue is what the government allows them to show. Im pretty sure that SNPedia syncer isn't online anymore, but that was what made 23andme a great service for me

ramraj07 3y ago
I'm happy that this found a dangerous mutation in your family and saved lives but what's at stake is unfortunately much larger and not worth the risk for most people IMO. You are risking the publication of the genetic makeup and vulnerabilities not just of yourself but thousands of people living today and will live for the next several generations, and to some extent in perpetuity. I don't want to condemn my family to that risk yet! I'm sincerely hoping a security first service that actually earns it's trust shows up soon!
- shmatt 3y ago
  Is there OpSec better than my local doctor or hospital? I feel like I hear about ransomware attacks on hospitals every week. My DNA was also scanned[1] and saved by a hospital before having my first child - as most people with my heritage do. So thats 3 times in my life I did genetic testing. Which one is more prone to be hacked - Mount Sinai, LabCorp, 23andme? Who knows [1] https://womenshealth.labcorp.com/providers/carrier-screening/inheritest-panels/inheritest-500-plus-panel-disorders https://womenshealth.labcorp.com/providers/carrier-screening...
  - deleted 3y ago
    [deleted]
  - 3y ago

pphysch 3y ago

I'm surprised the health insurance industry isn't implicated here. Genome comparisons are a goldmine for creating risk models for individuals... I would even speculate that the whole thing was driven by insurance industry rather than pharma industry. "We're doing this for medicine!" looks like PR lipstick.

dekhn 3y ago
Why would health insurance be implicated here? They're not allowed to use this sort of data due to GINA law.
- pphysch 3y ago
  I would be be shocked if there aren't huge loopholes in GINA or they weren't doing this under the table. Like you sprinkle some derivatives of GI into your huge model and then "our model assesses that risk XYZ is likely..." without ever mentioning GI to the customer. Our main healthcare "privacy" law in US, HIPAA, is structured to protect insurance firms' right to our private health data (while otherwise sensibly restricting access to it). It is not a given that private finance firms ought to have legally protected, virtually exclusive access to our sensitive health information, but they do in America. Facts like this make me skeptical that GINA was written and is enforced in good faith.
  - justrealist 3y ago
    > I would be be shocked if there aren't huge loopholes in GINA or they weren't doing this under the table. Sorry but you have no idea what you are talking about. Big corporations are absolutely terrified of accidentally using health data illegally, no insurance company in the US would touch this with a 10000 foot pole.
    - pphysch 3y ago
      > Big corporations are absolutely terrified of accidentally using health data illegally I am acutely aware of this, and am also aware that most "big corporations" have nothing to gain from mishandling/abusing PHI. But health insurance firms obviously do. Another notable analog is the credit reporting industry. Despite serious & repeated abuses of consumer financial privacy, these companies consistently get off with a slap on the wrist. And we're supposed to believe that their neighbors, the insurance industry, are good guys from a radically different paradigm?

justrealist 3y ago

Well the ironic part is that their SNP array now would be fairly effective because genome imputation using 1k genomes etc has gotten so good. But now WGS is cheap enough that the value prop of using imputation is getting more and more marginal.

dekhn 3y ago
it makes me so glad to hear that, because my first reaction (well over a decade ago) to people using arrays and imputation is: they data is there, why are you estimating it probabilistically (realistically, at the time, whole genomes cost too much, and scientists iwll always do short term probabilistic estimation to get an approximate answer quickly.

ravenstine 3y ago

It's all about branding. They got in early and really got their name out there. Everyone has heard of 23 And Me. Off the top of my head, I can't think of another brand (though I know they exist), and people I know IRL still refer to 23 And Me.

vinniepukh 3y ago

Why did the CEO extract money from specifically Google and why did Google continue funding them despite all the shortcomings?

dekhn 3y ago
The CEO, Anne Wojcicki, was married to Sergey Brin (founder of google): https://www.nytimes.com/2007/05/23/technology/23google.html https://www.nytimes.com/2007/05/23/technology/23google.html Her sister Susan was also an exec at Google and provided space for the company when it first got started. Sergey loaned a bunch of money to 23&me before that, and his loan was repaid when google invested (which sounds like a conflict of interest to me, but then again, Sergey is a bunch of conflict of interests). Later, GV (Google Ventures) invested more in 23&Me. At the time, the head of GV was Bill Maris, who had worked with Anne before she founded her company (and I was an advisor for GV around that time; if they'd asked me, I would have said "don't put more money in this turkey"). So basically a little family of people who wanted to see the company succeed. I think they've been given their time to succeed and at best, have reached a sort of steady state where they are not going out of business, but also aren't achieving the interesting mission they were based on.