28 ms·

All Those 23andMe Spit Tests Were Part of a Bigger Plan

129 points by loriverkutya 5y ago

wly_cdgr 5y ago
Really?! But it all seemed so innocuous!
guilhas 5y ago
Even more must have been collected with PCR tests
- JulianMorrison 5y ago
  Even if I was Dr Evil, with an evil medical degree from Evil University, I would think twice about starting my plan to capture the DNA of the public (mwahaha) by picking deliberately biohazardous samples.
  - wongarsu 5y ago
    Especially when you could just operate a chain of labs that run blood tests, and covertly sequence them on the side. Easier to scale, not reliant on something temporary like a pandemic, and probably has a more representative sample of the population than PCR tests.
    - Symmetry 5y ago
      I wonder if it would be feasible to just set up a toilet to provide genetic samples?
      - JulianMorrison 5y ago
        Or hoover the seats in a bus.
    - jschwartzi 5y ago
      If you did start something like that you could call it Labcorp and make sure it’s the only game in town.
      - saalweachter 5y ago
        Not to be confused with labcore, the mad scientist aesthetic you'll be adhering to behind closed doors.
  - gruez 5y ago
    >by picking deliberately biohazardous samples. why is that an issue? aren't villains known for their lack of care for their henchmen[1]? Also, apparently covid isn't really transmitted via physical contact[2], so operating such a lab probably isn't too dangerous. Finally, presumably there's PPE to protect against this sort of stuff, if you're not the type of villain that mistreats their henchmen. [1] https://tvtropes.org/pmwiki/pmwiki.php/Main/BadBoss https://tvtropes.org/pmwiki/pmwiki.php/Main/BadBoss [2] https://www.cdc.gov/coronavirus/2019-ncov/more/science-and-research/surface-transmission.html https://www.cdc.gov/coronavirus/2019-ncov/more/science-and-r...
    - JulianMorrison 5y ago
      That would be "random fomites in the environment" not "PCR testing swabs with deliberately maximized chance of virus content"
  - JulianMorrison 5y ago
    Oh hey, I stand corrected. https://inews.co.uk/news/covid-testing-provider-investigated-watchdog-plans-sell-customers-dna-samples-medical-research-1299909 https://inews.co.uk/news/covid-testing-provider-investigated...
c7DJTLrn 5y ago
It's strange how Anne Wojcicki's company has done more for science than Theranos ever did yet most have never heard of her. Even when you exclude the scandal Elizabeth Holmes got herself into, she was more well known.
- trentnix 5y ago
  The press is lazy and incurious. They don't pursue stories, they reprint press releases. And the even sadder part is they believe the press releases and report accordingly. The press assures us they'd be better if we gave them a bunch of money (even begging for government money), but the truth is that it has always been like this.
  - revolvingocelot 5y ago
    I upvoted this, but it's not quite true. It's not wrong to say that the press has always incuriously reprinted the press releases of the powerful, but in days of yore there also used to be a thing called "investigative journalism", largely snuffed out now, thanks to the consolidation of media ownership. What that's done to the structure of newsrooms, the compensation offered therein, and hell, the whole mission of print media, is only obvious to those old enough to remember what local papers used to look like.
    - newsclues 5y ago
      Depends on the posters age, many people grew up in an age of poor journalistic standards, not all of us remember the golden age.
    - Frost1x 5y ago
      "News" and large facets of "journalism" have now, unfortunately, become nothing more than propoganda platforms filled with opinionated narratives to paint stories. Even when they're not, they often use selection bias to choose what they do and don't report on to tote some agenda. Part of it is due to monetary incentives of businesses that now own the media outlets. Part of it is due to what the general public has interest in and will pay for. Like pretty much all professions, it's also become far more demanding to be a good journalist or investigative journalist due to how many stories reported on require more specialized knowledge to understand and portray correctly. The bar used to be lower and a journalist could better grasp a situation or understanding. Now, with a lot of technology and science, you pretty much need a pretty deep and well rounded background to properly understand and address issues. The general bar of education has risen, including that of deceitful people, which places even higher demands on journalists to put them in check. Could dig further into the point but the moral of the story is that the bar is raising to a point where misinformation and disinformation have an edge due to the sheer volume of information, lack of ability for any one person to have enough understanding, and incentives to be deceitful. That means the barrier to entry cost to dig out deceit has often become too high. I'm surprised we see much of any interesting investigative journalism anymore aside from uncovering some of the more obvious and massive schemes. Forget catching clever and sophisticated deceit, you need whistle-blowers for this.
sgslo 5y ago
"News". Anne Wojcicki has been upfront with this strategy for many years, even in a fantastic podcast with YC back in 2018: https://www.ycombinator.com/library/5I-on-starting-and-scaling-a-healthcare-startup-23andme https://www.ycombinator.com/library/5I-on-starting-and-scali... > If I have the world's health information, what could I do? And people were like, "Well, you could cure, you could save, you'd know a lot." The idea really was, well, we should do that.
- tchalla 5y ago
  In 2018 itself, 23andMe had a partnership with GSK > As part of the collaboration, GSK can also change the way we invite patients into clinical trials. The genetic and disease information 23andMe customers share will allow us to identify the kind of patients who are most likely to respond well to new treatments so that 23andMe can invite customers who have consented to be contacted to participate in studies that are relevant to them. This could significantly shorten recruitment and reduce clinical development timelines, allowing some medicines to be delivered to patients faster. https://us.gsk.com/en-us/behind-the-science/innovation/you-me-and-23andme-discovering-new-medicines-through-genetics/ https://us.gsk.com/en-us/behind-the-science/innovation/you-m... I'm not sure what the "news" is.
  - tpmx 5y ago
    They're probably in the news because quarterly results are released in two days. Their core product is facing a retracting market (partially) because of privacy concerns. Number of genotyped customers: FY18A: 2.4M FY19A: 3.4M FY20A: 2.0M FY21A: 1.5M FY22Q1: 0.3M Numbers from https://investors.23andme.com/static-files/8db681b8-4ea3-452f-a3e6-3a151d8866d9 https://investors.23andme.com/static-files/8db681b8-4ea3-452... (page 11)
    - dnissley 5y ago
      How do you know it's because of privacy concerns and not because they've exhausted the market of people who want to know about this kind of info? This is very much a one and done type of product -- in fact, the reason I myself haven't gone ahead and done it is because my parents and grandparents have already gotten it done, and I've looked over their results, so I'm assuming there's very little I could learn about myself from it.
travisparker 5y ago
“It’s for the ‘greater good’, therefore it’s fine. What could go wrong?”
- _red 5y ago
  Hopefully no one ever funds "gain of function research" using this corpus of data...
  - cblconfederate 5y ago
    What's the better alternative? Halt science as if it's the middle ages?
    - _red 5y ago
      Maybe best to not use public funds to create bio-weapons to great reset the plebs with?
    - jessriedel 5y ago
      You don't have to halt science to decide that the benefits of gain-of-function research is not worth the risk. We don't test nuclear weapons anymore either.
      - 7steps2much 5y ago
        Because "we" arrived at a point where they are, arguably, good enough. Not to mention that "others" still do test them. See north korea for example.
        jessriedel 5y ago
        Our knowledge of pathogens is not good enough. See the current pandemic. The question is whether the net benefit of this sort of research, once the risk are properly accounted for, is larger than the benefit we could get with alternative research methods. The fact that someone else is taking huge risks of unleashing another pandemic is not a good reason for us to do so.
farresito 5y ago
I think 23andme will truly have an impact once it starts doing full genome sequencing, because as of right now it just tests a very small subset of the whole genome.
- cblconfederate 5y ago
  But it's a crucial subset. It's not that WGS is that expensive, but what can you do with it that cant be done with 23andme?
  - farresito 5y ago
    Correct me if I'm wrong. The issue with SNPs is that they are common in the population, and hence they tend to have small effects, because if a variant is common and gives the carrier a big advantage, the variant will over time get absorbed by most of the population, and the same applies the opposite way. So the interesting variants are those that rare, because they are the ones that often cause genes to malfunction.
  - yread 5y ago
    point mutations?
    - cblconfederate 5y ago
      but are the ones that are not already in the covered snps interesting ?
      - yread 5y ago
        23andMe only has an overlap of ~30k with the ~500k (?) ClinVar variants. So less than 10% is covered.
    - hwillis 5y ago
      That's what SNPs are. Specifically, point mutations that are associated with known outcomes (ie diseases) or with group differences. Point mutations occurring outside SNPs are almost by definition not yet useful. If we know what the gene does or is related to, it's an SNP.
hoseja 5y ago
Yeah, to create DNA profiles for more effective application of the boot to the neck.
cblconfederate 5y ago
That's what i signed up to many years ago. I liked their health reports. What's the reasoning for no longer allowing them to give us updated health reports? I don't personally care about my 6th cousins, i can barely keep up with the 2nd ones.
- Symmetry 5y ago
  FDA decided they were a medical device company rather than just a genetics testing laboratory.
revolvingocelot 5y ago
https://archive.md/ydpln https://archive.md/ydpln
dekhn 5y ago
it's funny how everybody thinks 23andme has some sort of grand plan. they had a grand plan. it didn't work out. now they provide a service that tells you who your relatives are and where you came from (genetically), which works well. But the health side of their product continues to be useless. Genomics continues to be one of the most oversold fields.
- cblconfederate 5y ago
  It didnt work out or wasn't allowed to work out? I can upload my data to promethease to get health reports. I bet these would be a lot more useful if we had been freely allowed to exchange this data with each other.
  - dekhn 5y ago
    Can you tell us more abuot your health reports? My full genome sequence (superior to any exome panel or SNP marker test) more or less said "you don't have any risk factors that we know of". WHich is about as non-actionable as it gets.
    - cblconfederate 5y ago
      Apart from higher chance of "restless legs syndrome" and allergies to some drugs there was not a lot that was actionable indeed. Still i would like to have them and i dont see something wrong with having scientifically backed, objective information. This is from my 23andme data. I have also got a full 30x sequencing from a bargain offer, but i haven't analyzed those. Never got to it, apart from downloading some app to browse them. Which stresses my point why the analysis that these services could provide is useful.
- NoFingerprints 5y ago
  I feel the value in genomics is in the raw difficult science several levels of experimentation below the data. I fear that the biggest value for the present in much of the population scale genomics is in forensics rather than science.
- deleted 5y ago
pkphilip 5y ago
Why is everyone acting surprised? The value of 23AndMe was always in the DNA of millions of people they had in their database.
cletus 5y ago
So this isn't directly resultant from 23andMe but it's hard to overstate just what a revolution has happened in genetics in the last decade. The specific subfield I'm talking about is genetic genealogy. In the late 20th century, genetic testing was a revolution but it was a simple test. Given two samples X and Y it produced a boolean function: f(x, y) -> { 1 if they match, 0 if they don't This led to a number of convictions and exonerations. it has been a huge boon for both criminal prosecution and justice. So what happened in the last decade is the development of a more sophisticated function: f(x, y) -> [0, 1] showing how related they are This most famously led to the identification of the Golden State Killer [1] and also helped identify victims of the Bear Brook murders [2]. In the space of 10 years this went from not existing to being a massive labour-intensive process to a trivial process. The use of this is now almost routine thanks to the likes of GEDmatch [3] Beyond this, there's a whole bunch of ethical implications. Privacy covers things like what a DNA testing site can do with your data. This may potentially impact health insurance access in the like, particularly in the US (sadly). But the really interesting part of this is that a person may be identified criminally or for insurance purposes without ever having uploaded a DNA sample through relatives who have. For example, if two cousins on both sides of your family have the recessive gene for Cystic Fibrosis, it increases the probability you do too (though simple Bayesian reasoning). It's going to be interesting to see what comes of this because it's still early days. [1]: https://en.wikipedia.org/wiki/Joseph_James_DeAngelo https://en.wikipedia.org/wiki/Joseph_James_DeAngelo [2]: https://en.wikipedia.org/wiki/Bear_Brook_murders https://en.wikipedia.org/wiki/Bear_Brook_murders [3]: https://www.gedmatch.com/ https://www.gedmatch.com/
dmix 5y ago
> Privacy advocates have been warning for years that the spit-tube deal is lopsided Does that mean we could get to the point where they’ll pay us to get access to our DNA (+ medical history?).
mabbo 5y ago
I'm annoyed at the presumption that I, as a customer, was not aware or on-board with what 23andMe is doing. I did. I'm happy to be part of this. I don't care that someone is making money because of it. I'm just glad that biomedical research to save lives is happening. Why is it a bad thing? And as a side benefit, through this system I got to meet my second cousin and tell her what my mother remembers about her now-passed-on grandmother (that literally happened last night and I'm still excited about it). I am a bit nervous about some of the 'we found the criminal by searching the company's DNA database' stuff. I think some regulation around that is needed. And perhaps 23andMe needs to make it more obvious to customers that they will do this research using the DNA. But as an informed consumer, I was happy to become a customer and participant in this fascinating system.
- SQueeeeeL 5y ago
  Cool, I'm glad that brought you joy. I wish they gave both of us a check box at the bottom of my spit test to opt in and everyone's happy. But they know at least half of their population would've opted out...
  - michaeljohansen 5y ago
    23andMe provides checkboxes for everything you could want to change. Even better than checkboxes on a paper form, these are consents you can give / retract at any time: - https://you.23andme.com/user/edit/privacy/ https://you.23andme.com/user/edit/privacy/ - https://you.23andme.com/user/edit/research/ https://you.23andme.com/user/edit/research/ - https://you.23andme.com/user/edit/records/ https://you.23andme.com/user/edit/records/
    - falcolas 5y ago
      A shame your dad can’t opt out. Or your mom. Or their siblings and their children. And so forth.
  - cblconfederate 5y ago
    You can go to the settings and opt out of their Research consent document now, which also explains how the data is used. I think they 've been pretty clear about how they plan to use the data of existing customers. There is also the danger of people having a false sense of privacy by opting out of 1 or 2 genetic tests. This is shared information between relatives and the population at large, not exactly top secret data. The degrees of separation between you and me are 2-3 , so it s very easy to identify people indirectly , hence why it was possible to solve decades-old crimes. I think our genetic information is less private than the contents of our brains, in general.
piokoch 5y ago
I didn't know what this company does, so I've checked website, after usual banners galore, trying to cancel them all I am there. The answer is short: "Find out what your DNA says about you and your family." Then: "- See how your DNA breaks out across 2000+ regions worldwide - Discover DNA relatives from around the world - Share reports with family and friends - Learn how your DNA influences your facial features, taste, smell and other traits" What is actual usage of this data? Education? Curiosity? To have something to be shared on Instagram? They don't mention predicting cancer risks, etc. at best this looks like some kind of hobby stuff, like building ones genealogy tree. Or maybe the way to figure out if one is a true kids's father. Could have some interesting consequences. Besides "Share reports with family and friends". Really, is this inevitable, does everything has to be shared with friends, even ones genome details? What next? Proctologist visit outcomes? I don't even mention embarrassment of the "Customer Stories" section. "I feel very much at peace with my identity and who I am as a woman. I feel complete". I don't even want to guess if this is some marketing bullshit or someone really felt "complete" by checking genome... People just don't realize that having their DNA hand over is a risk. A big risk. But I have to admit that company is at least very honest about this risk, which is good and rare, so that's a credit for them: "In the event of a data breach it is possible that your data could be associated with your identity, which could be used against your interests." That's nice way to say, if we are breached, well, we've told you. They also admit that will give ones data to law enforcement. Something good to know too. Genetic material taken from crime scene is often polluted, incomplete, so one can go to prison on behalf of the real criminal.
- irl_chad 5y ago
  What makes a person so negative? Have you really never asked yourself where you come from? You don’t think that’s an interesting conversation piece?
dionidium 5y ago
It's kind of weird to have this experience over and over again of being told I'm supposed to care about something that I find trivial. Yeah, I assumed 23andMe would do stuff like this. I don't care. I'm not outraged. It doesn't bother me when people make money. And this doesn't strike me as a particularly surprising outcome.
citilife 5y ago
23andMe was insanely inaccurate for 100% of the predictions related to myself. I'm also concerned about what is known or suspected about my family. Especially, with how inaccurate the predictions are.
- ernst_10 5y ago
  How was it inaccurate?

129 points by loriverkutya 5y ago

wly_cdgr 5y ago

Really?! But it all seemed so innocuous!

guilhas 5y ago

Even more must have been collected with PCR tests

JulianMorrison 5y ago
Even if I was Dr Evil, with an evil medical degree from Evil University, I would think twice about starting my plan to capture the DNA of the public (mwahaha) by picking deliberately biohazardous samples.
- wongarsu 5y ago
  Especially when you could just operate a chain of labs that run blood tests, and covertly sequence them on the side. Easier to scale, not reliant on something temporary like a pandemic, and probably has a more representative sample of the population than PCR tests.
  - Symmetry 5y ago
    I wonder if it would be feasible to just set up a toilet to provide genetic samples?
    - JulianMorrison 5y ago
      Or hoover the seats in a bus.
  - jschwartzi 5y ago
    If you did start something like that you could call it Labcorp and make sure it’s the only game in town.
    - saalweachter 5y ago
      Not to be confused with labcore, the mad scientist aesthetic you'll be adhering to behind closed doors.
- gruez 5y ago
  >by picking deliberately biohazardous samples. why is that an issue? aren't villains known for their lack of care for their henchmen[1]? Also, apparently covid isn't really transmitted via physical contact[2], so operating such a lab probably isn't too dangerous. Finally, presumably there's PPE to protect against this sort of stuff, if you're not the type of villain that mistreats their henchmen. [1] https://tvtropes.org/pmwiki/pmwiki.php/Main/BadBoss https://tvtropes.org/pmwiki/pmwiki.php/Main/BadBoss [2] https://www.cdc.gov/coronavirus/2019-ncov/more/science-and-research/surface-transmission.html https://www.cdc.gov/coronavirus/2019-ncov/more/science-and-r...
  - JulianMorrison 5y ago
    That would be "random fomites in the environment" not "PCR testing swabs with deliberately maximized chance of virus content"
- JulianMorrison 5y ago
  Oh hey, I stand corrected. https://inews.co.uk/news/covid-testing-provider-investigated-watchdog-plans-sell-customers-dna-samples-medical-research-1299909 https://inews.co.uk/news/covid-testing-provider-investigated...

c7DJTLrn 5y ago

It's strange how Anne Wojcicki's company has done more for science than Theranos ever did yet most have never heard of her. Even when you exclude the scandal Elizabeth Holmes got herself into, she was more well known.

trentnix 5y ago
The press is lazy and incurious. They don't pursue stories, they reprint press releases. And the even sadder part is they believe the press releases and report accordingly. The press assures us they'd be better if we gave them a bunch of money (even begging for government money), but the truth is that it has always been like this.
- revolvingocelot 5y ago
  I upvoted this, but it's not quite true. It's not wrong to say that the press has always incuriously reprinted the press releases of the powerful, but in days of yore there also used to be a thing called "investigative journalism", largely snuffed out now, thanks to the consolidation of media ownership. What that's done to the structure of newsrooms, the compensation offered therein, and hell, the whole mission of print media, is only obvious to those old enough to remember what local papers used to look like.
  - newsclues 5y ago
    Depends on the posters age, many people grew up in an age of poor journalistic standards, not all of us remember the golden age.
  - Frost1x 5y ago
    "News" and large facets of "journalism" have now, unfortunately, become nothing more than propoganda platforms filled with opinionated narratives to paint stories. Even when they're not, they often use selection bias to choose what they do and don't report on to tote some agenda. Part of it is due to monetary incentives of businesses that now own the media outlets. Part of it is due to what the general public has interest in and will pay for. Like pretty much all professions, it's also become far more demanding to be a good journalist or investigative journalist due to how many stories reported on require more specialized knowledge to understand and portray correctly. The bar used to be lower and a journalist could better grasp a situation or understanding. Now, with a lot of technology and science, you pretty much need a pretty deep and well rounded background to properly understand and address issues. The general bar of education has risen, including that of deceitful people, which places even higher demands on journalists to put them in check. Could dig further into the point but the moral of the story is that the bar is raising to a point where misinformation and disinformation have an edge due to the sheer volume of information, lack of ability for any one person to have enough understanding, and incentives to be deceitful. That means the barrier to entry cost to dig out deceit has often become too high. I'm surprised we see much of any interesting investigative journalism anymore aside from uncovering some of the more obvious and massive schemes. Forget catching clever and sophisticated deceit, you need whistle-blowers for this.

sgslo 5y ago

"News". Anne Wojcicki has been upfront with this strategy for many years, even in a fantastic podcast with YC back in 2018: https://www.ycombinator.com/library/5I-on-starting-and-scaling-a-healthcare-startup-23andme https://www.ycombinator.com/library/5I-on-starting-and-scali... > If I have the world's health information, what could I do? And people were like, "Well, you could cure, you could save, you'd know a lot." The idea really was, well, we should do that.

tchalla 5y ago
In 2018 itself, 23andMe had a partnership with GSK > As part of the collaboration, GSK can also change the way we invite patients into clinical trials. The genetic and disease information 23andMe customers share will allow us to identify the kind of patients who are most likely to respond well to new treatments so that 23andMe can invite customers who have consented to be contacted to participate in studies that are relevant to them. This could significantly shorten recruitment and reduce clinical development timelines, allowing some medicines to be delivered to patients faster. https://us.gsk.com/en-us/behind-the-science/innovation/you-me-and-23andme-discovering-new-medicines-through-genetics/ https://us.gsk.com/en-us/behind-the-science/innovation/you-m... I'm not sure what the "news" is.
- tpmx 5y ago
  They're probably in the news because quarterly results are released in two days. Their core product is facing a retracting market (partially) because of privacy concerns. Number of genotyped customers: FY18A: 2.4M FY19A: 3.4M FY20A: 2.0M FY21A: 1.5M FY22Q1: 0.3M Numbers from https://investors.23andme.com/static-files/8db681b8-4ea3-452f-a3e6-3a151d8866d9 https://investors.23andme.com/static-files/8db681b8-4ea3-452... (page 11)
  - dnissley 5y ago
    How do you know it's because of privacy concerns and not because they've exhausted the market of people who want to know about this kind of info? This is very much a one and done type of product -- in fact, the reason I myself haven't gone ahead and done it is because my parents and grandparents have already gotten it done, and I've looked over their results, so I'm assuming there's very little I could learn about myself from it.

travisparker 5y ago

“It’s for the ‘greater good’, therefore it’s fine. What could go wrong?”

_red 5y ago
Hopefully no one ever funds "gain of function research" using this corpus of data...
- cblconfederate 5y ago
  What's the better alternative? Halt science as if it's the middle ages?
  - _red 5y ago
    Maybe best to not use public funds to create bio-weapons to great reset the plebs with?
  - jessriedel 5y ago
    You don't have to halt science to decide that the benefits of gain-of-function research is not worth the risk. We don't test nuclear weapons anymore either.
    - 7steps2much 5y ago
      Because "we" arrived at a point where they are, arguably, good enough. Not to mention that "others" still do test them. See north korea for example.
      - jessriedel 5y ago
        Our knowledge of pathogens is not good enough. See the current pandemic. The question is whether the net benefit of this sort of research, once the risk are properly accounted for, is larger than the benefit we could get with alternative research methods. The fact that someone else is taking huge risks of unleashing another pandemic is not a good reason for us to do so.

farresito 5y ago

I think 23andme will truly have an impact once it starts doing full genome sequencing, because as of right now it just tests a very small subset of the whole genome.

cblconfederate 5y ago
But it's a crucial subset. It's not that WGS is that expensive, but what can you do with it that cant be done with 23andme?
- farresito 5y ago
  Correct me if I'm wrong. The issue with SNPs is that they are common in the population, and hence they tend to have small effects, because if a variant is common and gives the carrier a big advantage, the variant will over time get absorbed by most of the population, and the same applies the opposite way. So the interesting variants are those that rare, because they are the ones that often cause genes to malfunction.
- yread 5y ago
  point mutations?
  - cblconfederate 5y ago
    but are the ones that are not already in the covered snps interesting ?
    - yread 5y ago
      23andMe only has an overlap of ~30k with the ~500k (?) ClinVar variants. So less than 10% is covered.
  - hwillis 5y ago
    That's what SNPs are. Specifically, point mutations that are associated with known outcomes (ie diseases) or with group differences. Point mutations occurring outside SNPs are almost by definition not yet useful. If we know what the gene does or is related to, it's an SNP.

hoseja 5y ago

Yeah, to create DNA profiles for more effective application of the boot to the neck.

cblconfederate 5y ago

That's what i signed up to many years ago. I liked their health reports. What's the reasoning for no longer allowing them to give us updated health reports? I don't personally care about my 6th cousins, i can barely keep up with the 2nd ones.

Symmetry 5y ago
FDA decided they were a medical device company rather than just a genetics testing laboratory.

revolvingocelot 5y ago

https://archive.md/ydpln https://archive.md/ydpln

dekhn 5y ago

it's funny how everybody thinks 23andme has some sort of grand plan. they had a grand plan. it didn't work out. now they provide a service that tells you who your relatives are and where you came from (genetically), which works well. But the health side of their product continues to be useless. Genomics continues to be one of the most oversold fields.

cblconfederate 5y ago
It didnt work out or wasn't allowed to work out? I can upload my data to promethease to get health reports. I bet these would be a lot more useful if we had been freely allowed to exchange this data with each other.
- dekhn 5y ago
  Can you tell us more abuot your health reports? My full genome sequence (superior to any exome panel or SNP marker test) more or less said "you don't have any risk factors that we know of". WHich is about as non-actionable as it gets.
  - cblconfederate 5y ago
    Apart from higher chance of "restless legs syndrome" and allergies to some drugs there was not a lot that was actionable indeed. Still i would like to have them and i dont see something wrong with having scientifically backed, objective information. This is from my 23andme data. I have also got a full 30x sequencing from a bargain offer, but i haven't analyzed those. Never got to it, apart from downloading some app to browse them. Which stresses my point why the analysis that these services could provide is useful.
NoFingerprints 5y ago
I feel the value in genomics is in the raw difficult science several levels of experimentation below the data. I fear that the biggest value for the present in much of the population scale genomics is in forensics rather than science.
deleted 5y ago

pkphilip 5y ago

Why is everyone acting surprised? The value of 23AndMe was always in the DNA of millions of people they had in their database.

cletus 5y ago

So this isn't directly resultant from 23andMe but it's hard to overstate just what a revolution has happened in genetics in the last decade. The specific subfield I'm talking about is genetic genealogy. In the late 20th century, genetic testing was a revolution but it was a simple test. Given two samples X and Y it produced a boolean function: f(x, y) -> { 1 if they match, 0 if they don't This led to a number of convictions and exonerations. it has been a huge boon for both criminal prosecution and justice. So what happened in the last decade is the development of a more sophisticated function: f(x, y) -> [0, 1] showing how related they are This most famously led to the identification of the Golden State Killer [1] and also helped identify victims of the Bear Brook murders [2]. In the space of 10 years this went from not existing to being a massive labour-intensive process to a trivial process. The use of this is now almost routine thanks to the likes of GEDmatch [3] Beyond this, there's a whole bunch of ethical implications. Privacy covers things like what a DNA testing site can do with your data. This may potentially impact health insurance access in the like, particularly in the US (sadly). But the really interesting part of this is that a person may be identified criminally or for insurance purposes without ever having uploaded a DNA sample through relatives who have. For example, if two cousins on both sides of your family have the recessive gene for Cystic Fibrosis, it increases the probability you do too (though simple Bayesian reasoning). It's going to be interesting to see what comes of this because it's still early days. [1]: https://en.wikipedia.org/wiki/Joseph_James_DeAngelo https://en.wikipedia.org/wiki/Joseph_James_DeAngelo [2]: https://en.wikipedia.org/wiki/Bear_Brook_murders https://en.wikipedia.org/wiki/Bear_Brook_murders [3]: https://www.gedmatch.com/ https://www.gedmatch.com/

dmix 5y ago

> Privacy advocates have been warning for years that the spit-tube deal is lopsided Does that mean we could get to the point where they’ll pay us to get access to our DNA (+ medical history?).

mabbo 5y ago

I'm annoyed at the presumption that I, as a customer, was not aware or on-board with what 23andMe is doing. I did. I'm happy to be part of this. I don't care that someone is making money because of it. I'm just glad that biomedical research to save lives is happening. Why is it a bad thing? And as a side benefit, through this system I got to meet my second cousin and tell her what my mother remembers about her now-passed-on grandmother (that literally happened last night and I'm still excited about it). I am a bit nervous about some of the 'we found the criminal by searching the company's DNA database' stuff. I think some regulation around that is needed. And perhaps 23andMe needs to make it more obvious to customers that they will do this research using the DNA. But as an informed consumer, I was happy to become a customer and participant in this fascinating system.

SQueeeeeL 5y ago
Cool, I'm glad that brought you joy. I wish they gave both of us a check box at the bottom of my spit test to opt in and everyone's happy. But they know at least half of their population would've opted out...
- michaeljohansen 5y ago
  23andMe provides checkboxes for everything you could want to change. Even better than checkboxes on a paper form, these are consents you can give / retract at any time: - https://you.23andme.com/user/edit/privacy/ https://you.23andme.com/user/edit/privacy/ - https://you.23andme.com/user/edit/research/ https://you.23andme.com/user/edit/research/ - https://you.23andme.com/user/edit/records/ https://you.23andme.com/user/edit/records/
  - falcolas 5y ago
    A shame your dad can’t opt out. Or your mom. Or their siblings and their children. And so forth.
- cblconfederate 5y ago
  You can go to the settings and opt out of their Research consent document now, which also explains how the data is used. I think they 've been pretty clear about how they plan to use the data of existing customers. There is also the danger of people having a false sense of privacy by opting out of 1 or 2 genetic tests. This is shared information between relatives and the population at large, not exactly top secret data. The degrees of separation between you and me are 2-3 , so it s very easy to identify people indirectly , hence why it was possible to solve decades-old crimes. I think our genetic information is less private than the contents of our brains, in general.

piokoch 5y ago

I didn't know what this company does, so I've checked website, after usual banners galore, trying to cancel them all I am there. The answer is short: "Find out what your DNA says about you and your family." Then: "- See how your DNA breaks out across 2000+ regions worldwide - Discover DNA relatives from around the world - Share reports with family and friends - Learn how your DNA influences your facial features, taste, smell and other traits" What is actual usage of this data? Education? Curiosity? To have something to be shared on Instagram? They don't mention predicting cancer risks, etc. at best this looks like some kind of hobby stuff, like building ones genealogy tree. Or maybe the way to figure out if one is a true kids's father. Could have some interesting consequences. Besides "Share reports with family and friends". Really, is this inevitable, does everything has to be shared with friends, even ones genome details? What next? Proctologist visit outcomes? I don't even mention embarrassment of the "Customer Stories" section. "I feel very much at peace with my identity and who I am as a woman. I feel complete". I don't even want to guess if this is some marketing bullshit or someone really felt "complete" by checking genome... People just don't realize that having their DNA hand over is a risk. A big risk. But I have to admit that company is at least very honest about this risk, which is good and rare, so that's a credit for them: "In the event of a data breach it is possible that your data could be associated with your identity, which could be used against your interests." That's nice way to say, if we are breached, well, we've told you. They also admit that will give ones data to law enforcement. Something good to know too. Genetic material taken from crime scene is often polluted, incomplete, so one can go to prison on behalf of the real criminal.

irl_chad 5y ago
What makes a person so negative? Have you really never asked yourself where you come from? You don’t think that’s an interesting conversation piece?

dionidium 5y ago

It's kind of weird to have this experience over and over again of being told I'm supposed to care about something that I find trivial. Yeah, I assumed 23andMe would do stuff like this. I don't care. I'm not outraged. It doesn't bother me when people make money. And this doesn't strike me as a particularly surprising outcome.

citilife 5y ago

23andMe was insanely inaccurate for 100% of the predictions related to myself. I'm also concerned about what is known or suspected about my family. Especially, with how inaccurate the predictions are.

ernst_10 5y ago
How was it inaccurate?