12 ms·

23andMe Is Monetizing Your DNA the Way Facebook Monetizes 'Likes'

155 points by chmars 10y ago

binaryanomaly 10y ago
Would be better to link directly to the original article/source? http://gizmodo.com/of-course-23andmes-business-plan-has-been-to-sell-your-1677810999 http://gizmodo.com/of-course-23andmes-business-plan-has-been...
- nolepointer 10y ago
  Yeah, and that article was published last year ...
  - binaryanomaly 10y ago
    Right. But still makes it to the top ;)
deleted 10y ago
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Fishman343 10y ago
This sort of data is exactly what I would not want to entrust to any organisation in the midst of all of the leaks and hacks we are seeing in the news. Let alone having them sell it legally to god knows who... I remember reading about a hack/leak of, I think around 20,000 people's fingerprint data from the US government, and thinking to myself about the consequences of this biological data falling into the wrong hands. If there are any spies in that list and any country, say China, gets a hold of it, there is no way to update that spy's security, you can't change their fingerprints the same way I can think of a new password after a hack. I might not be worried about anyone seeing my DNA profile at the moment, but maybe I will be in the future, and once the data is out there it can't be taken back or changed on my end.
- toomuchtodo 10y ago
  My entire genome is publicly available through Harvard's Personal Genome Project. I weighed the pros and cons, and settled on helping contribute to progress was more important than my fear of the unknown future.
  - deleted 10y ago
    [deleted]
  - Fishman343 10y ago
    I do appreciate that there is a lot of public good being done with the information, my comment came off more doom-and-gloomy than I had hoped. It just seems a bit risky to me, its the sort of thing that can't really be anonymous and that gets my hackles up so to speak.
  - dekhn 10y ago
    Me too! https://my.pgp-hms.org/profile/hu80855C https://my.pgp-hms.org/profile/hu80855C let me know if you find anything interesting. When I had it sequenced, the genetic counsellors said I had none of the common disease risk factors, which seemed a bit surprising. I have a background in biology, have done extensive work with genomic data, and weighed the future risks pretty carefully. Ultimately I didn't see any real problem with posting my raw BAM files and I assume a dedicated person could identify me if they tried.
  - CaptSpify 10y ago
    And if you want it to be available, it should be. I haven't seen anyone arguing that people who consent shouldn't be able to make their info public. My concern is for people who don't want that info to be made public
- dekhn 10y ago
  The data has been anonymized (donor name removed), deidentified (records which could be used to derive the donor name have been removed or otherwise modified), and aggregated (grouped across multiple individuals). It's unlikely (although not impossible) to take that data and convert it to DNA profiles of individuals.
eli 10y ago
What wrong with using aggregate dna data to help target cures for Parkinson's?
- dd9990 10y ago
  Even with the best of intentions things can go wrong and there are lots of unanswered questions in this emerging field. I'm sure the medical organizations involved are very aware of these problems, like protecting the privacy of those in the datasets. We've seen medical data de-anonymised in the past - it's not a trivial problem to solve. Likewise there are moral issues. What happens if you discover X% of people in the study have an extremely high risk of developing Parkinson's? Do you contact them? Do they have the right to know? Do you have the right to tell them? Would they even want to know? These are questions we're only starting to think about now.
  - corecoder 10y ago
    > Do you have the right to tell them? This I don't understand: what does it mean? What is the right to warn people of dangers? How do you earn such a right? How do you lose it? Have someone else tell them if you think you haven't the right somehow.
aub3bhat 10y ago
So on one side journalists lament lack of new drug development & just the shoddy state of healthcare tech, while as soon as any new data that can potentially unlock new drug targets (23andMe) or provider better support (Google DeepMind Health) is introduced, Such efforts are quickly demonized with spread of Fear, Uncertainty and Doubt. Rather than asking important questions such as at which level the "aggregate" data is shared, or what safeguards exists, the blog post and source "Gizmodo" article is quick to jump gun and spread fear (You are the product / you are being sold!!!). These posts are targeted to derive same emotional response that drive anti-vaxxers / anti-GMO nuts.
- electic 10y ago
  These blog posts are designed to generate clicks sadly.
- biomcgary 10y ago
  The 23andMe data is amazingly useful for academic research too. I am familiar with a study (but not involved), soon to be published, that used their data to identify genetic variants responsible for a particular problem with pregnancy. The price was phenomenally lower than a more typical genome wide association study (GWAS) of which there are several publicly funded efforts. The results are much cleaner than previous studies simply due to the large number of individuals involved. The privacy controls are very stringent too.
  - bradleyjg 10y ago
    No issue with the fact that it's a convenience sample?
  - jonlucc 10y ago
    They've also been offering to pharma companies the ability to help find cohorts of patients to make clinical trials much cheaper. Say we have a drug we think works in a sliver of patients with muscular dystroph; we can either go screen tons of diagnosed patients to find the cohort we think will respond, or we can go ask 23andMe to send some patients with the required genetic profile our way.
j2kun 10y ago
23andme has a very clear privacy policy on their landing page. So what's this all about?
- criddell 10y ago
  It's kind of funny that the blogger puts "those who speak do not know" at the top of one of his articles where he apparently has quite a bit to say.
- pdkl95 10y ago
  A privacy policy is not informed consent. Nobody would have a problem if they asked first. The tech industry likes to act as if they have a right to use any data they get their hands on for any purpose; why wouldn't you expect a hostile reaction when people see their data being used without their explicit permission? A common response is that nobody would participate with a proper opt-in system. That lack of participation is sending a clear message.
  - ig1 10y ago
    IIRC 23andme gives you a very specific "agree for this data to be used for medical research" consent prompt.
dominotw 10y ago
I have had 23andme for last 7-8 years; I've also paid for all their upgrades over the ye.ars I've not gotten a single useful information out of it and I don't hope to in near future. It got a bunch of useless information like ear wax type, hair color ect right but overall its waste of time and money. Privacy concerns over ppl exploiting raw data are overblown given its impossible to draw any useful conclusions from just raw data. You can find bunch of raw 23andme exports on github.
a13n 10y ago
The data is anonymized, who cares? Good for 23andMe. We could learn very important things from that data in aggregate. We need more aggregated data in healthcare.
- dd9990 10y ago
  Anonymization of data is not a simple task. Even with the noblest of intentions things can go wrong. See the problems with the sharing of medical data in the UK and examples from the US [1]. [1] http://arstechnica.com/tech-policy/2009/09/your-secrets-live-online-in-databases-of-ruin/ http://arstechnica.com/tech-policy/2009/09/your-secrets-live...
- krick 10y ago
  What do you mean "anonymized"? It's your DNA, it basically is you. Much more than your name, email address, or whatever you consider de-anonimization.
  - avree 10y ago
    It's not you until you tie it to your identity. I leave "DNA" all over; people cannot match it to me unless they have an existing sample that is definitely from me.
    - DanBC 10y ago
      They can get close if they have your relative's DNA. http://www.bbc.co.uk/news/uk-england-somerset-36245888 http://www.bbc.co.uk/news/uk-england-somerset-36245888 A man killed a girl. His DNA was gathered at the scene. 26 years later his daughter committed a minor crime, and had her DNA taken as part of her arrest, which led them back to him.
- ceejayoz 10y ago
  Anonymized doesn't always cut it. https://en.wikipedia.org/wiki/AOL_search_data_leak https://en.wikipedia.org/wiki/AOL_search_data_leak
stevecalifornia 10y ago
The pros of using 23andMe has vastly outweighed any cons, real or hypothetical. Here is a pro: I was able to print out a 3 page report to give to my new doctor that described what medications I had a low / high tolerance for and what medical conditions to look out for as I grow older. My doctor was floored-- and as a result we do a few extra tests every year to keep track of a potential eye condition I am at a higher risk for. So what is the potential cons? Perhaps my DNA data is used to help make drugs to help other people? Even if it's wasn't aggregated and my data wasn't anonymous I'm still unsure what I am supposed to be afraid of.
- mmcconnell1618 10y ago
  23andme doesn't provide this data. I'm assuming you exported your data to a 3rd party service. Could you share which one?
  - Roritharr 10y ago
    +1 from a 23andme customer who still thinks this was a questionable "funvestment"
  - RMacy 10y ago
    They used to
  - legaultm 10y ago
    23andme does provide health data in other countries like Canada.
    - burfog 10y ago
      I wonder what it would take to convince them that you are in Canada.
  - Symmetry 10y ago
    If you signed up for 23andMe when it was considered a medical testing lab rather than a medical device you can get a lot of extra information. I've heard you can use Genotation[1] to get something similar but I'm not sure how good a job they do on explaining things or telling you which parts come from multiple large studies and which are more speculative. http://genotation.stanford.edu/#start http://genotation.stanford.edu/#start
gwern 10y ago
This is really not surprising. Media coverage of 23andMe all the way back to its founding has said that it was offering SNP testing at-cost to build a big database which can be used for all sorts of things (although they were probably too optimistic about the usefulness of it). The real scandal is how 23andMe has published appallingly little research based on it. When I signed up with 23andMe, I was totally fine with them selling my genetic data; because I expected them to be participating in research. Instead, what we get is occasional cutesy stuff, occasional contribution of a cohort to other researchers, and a few papers a year on not particularly interesting topics like coffee consumption (some hits, naturally, since everything is heritable, but not an important topic). Contrast this to the UK Biobank which has been - with a fraction of the 23andMe sample size - releasing blockbuster paper after blockbuster paper over the past year alone!
- biomcgary 10y ago
  I think it may just be taking time for scientists to start working with their pipeline, which is somewhat cumbersome simply due to their privacy controls. I predict we will start seeing more studies soon. See my other comment on this thread for details about one of those studies.
  - gwern 10y ago
    That seems highly unlikely. 23andMe has been in operation since 2006. They hit UK Biobank sample size sometime around 2010. The Biobank researchers have been managing to pump out paper after paper (check out Bioxiv!) over the past half-year even though as far as I can tell, their genetics pipeline only started yielding data back around October 2015. How long are we supposed to wait on 23andMe before concluding that they just aren't making very good use of their data from the perspective of the public interest and have focused on commercialization?
mevile 10y ago
Nobody is forcing anyone to use 23andme. If this bothers you don't use this service?
- civilian 10y ago
  We didn't know they would do this when we signed up and gave them our DNA years ago?
Symmetry 10y ago
When I signed up for 23andMe at least half of my motive was to help them discover new things about people's genomes including the development of new drugs. So good for them, basically.
__a__ 10y ago
Is your DNA is now the "intellectual property" of a company? The company sells rights to access sequence infromation from your DNA, i.e., their intellectual property, for up to 60 million. Do you get any of that "up to 60 million"? And why should you? It's not like it's your DNA. You sold it. Well, actually you paid a fee to some company -- that has been threatened with being shut down by the FDA -- to take your DNA. Who started this company? Ex-wife of Google founder. According to Wikipedia the fee has jumped from $999 down to 99 then to 199. So what's the service worth? I don't know but I have a feeling it ends in 9. Personal genomics is a great idea that has been around for a long time. Well before Google and Facebook. But this company, applying "the Google approach" to biotech, was never a good idea. That's only my opinion. It's quite possible each of the 1 million or so donors was happy to donate their DNA "to science". The issue I have with "the Google approach" is that the company is not doing much except collecting data and running cheap tests -- and of course marketing. There's no world class research at 23andme. God only knows what they'll do with the money they get from selling people's personal information. They are just middlemen, selling off people's personal information for a easy profit. Very innovative.
chillingeffect 10y ago
Most people are missing that by only making this info available at market rates, rather than as a non-profit, it doesn't benefit the general good/public equally. It benefits incumbents asymmetrically. Furthermore, by only collecting data from those with excess income, afflictions of the poor will remain less diagnosable. There will be some trickle-down into poorer people, but if you think it "doesn't hurt to help people get healthier," try to see you're mainly helping wealthy people get wealthy people better. It's a slow-motion form of eugenics. We all know how well trickle-down theories work.
jacquesm 10y ago
It's fairly obvious by now that 23andme is just a collector of data, not a source of useful research or actual results. The best bit: you pay to give them your data. In that sense Google and Facebook are more fair, they give a free service and you pay with your data. For their customers (the ones who give them samples) 23andme is expensive infotainment, which will worse case lead to a whole pile of un-necessary tests done by a generation of empowered hypochondriacs.
- dgacmu 10y ago
  I don't see why you're drawing that conclusion. As a customer, I'm happy with what I got: (1) Fairly high-confidence data about known "big" inherited conditions. This was useful when my wife and I decided to have a child - there were several things we could safely rule out screening for. No surprises, but "no surprises" was what we were looking for. :) (2) lower-confidence data for less-substantiated issues (who knew? I'm a fair bit more likely to get venous thromboembolism than average. So now I take more walks up & down the aisle when I'm on an airplane.). Is this life-changing or even particularly important? Nah. But on the other hand, it costs me nothing - and probably makes me happier - to change my behavior to wiggle around more. :) (3) Some infotainment, primarily in the ancestry information. It was interesting. <shrugs> (4)a copy of my SNPs that I store locally and may someday upload to another analysis service.
  - jacquesm 10y ago
    > Fairly high-confidence data about known "big" inherited conditions. This was useful when my wife and I decided to have a child - there were several things we could safely rule out screening for. No surprises, but "no surprises" was what we were looking for. :) I'm sure you felt the need to get a second scan from a different company to confirm the negative results because this was so incredibly important to you.
    - dgacmu 10y ago
      The sarcastic tone of your response suggests that you're expecting me to be an idiot and/or a hypochondriac. I may or may not be a typical 23andme customer (and wasn't suggesting I was), but we had very specific, actionable reasons for using their services: Of course we didn't do a second scan, that would be silly. My wife carries some recessive genes for inherited conditions common among Ashkenazi jews, and because I don't know half of my ancestry, we simply wanted to confirm that I was negative for them. They're not particularly common, hence "no surprises." Checking the embryo for diseases such as Tay-Sachs typically require chorionic villus sampling, which comes with a 1-2% risk of causing a miscarriage. Spitting into a tube and sending it for SNP testing is cheap, easy, and low-risk. Had I been a carrier, we would have had CVS performed. The 23andme results let us safely skip having an extra procedure performed. Net win. (Note that this is not going out on a limb: screening for Tay-Sachs is strongly recommended by ACOG when both parents are known to be carriers.) There are screening panels designed to specifically hit only the carrier status markers we were interested in, but for me, the extra ancestral information tipped the scale in favor of the more general information.
gettingbored 10y ago
I'm sad to see such poorly written blog post with a clickbait title get all these points. I'd suggest that you instead read this well thought out (and rather complete) paper about the biomedical ethics at play within 23andMe's two-sided market business model. (no paywall to download the paper) https://bmcmedethics.biomedcentral.com/articles/10.1186/s12910-016-0101-9 https://bmcmedethics.biomedcentral.com/articles/10.1186/s129...
Kequc 10y ago
As a 23andme customer I guess this means that drugs that suit my DNA are therefore as a result of this study going to benefit me before anyone else. I don't mind if my DNA is used for scientific research and I don't call that a moral grey area in any way. It's data. Good for them and for me.
kjenkins 10y ago
If you're interested in personal DNA sequencing but don't want your genetic data shared (or you want to be able to analyze your entire genome, not just the small bit 23andMe does), check out Guardiome. This is their entire mission statement as a company.
dgcoffman 10y ago
Happy to participate. You're welcome, whoever benefits.
dgcoffman 10y ago
Happy to participate. You're welcome, whoever benefits.
deleted 10y ago
[deleted]
GoodForThem 10y ago
Lots of posts in this thread feel like distributed talking points, and seem to have been put together using a similar formula. "As a customer of 23andme" ... something about this benefiting everyone ... "good for them" ... something about clickbait (attack the source) There are legitimate privacy concerns here, and I really wish the tech industry would stop shitting on the concept of privacy and attempting to make anyone who brings those concerns up out to be an insane tinfoil hatter. We really don't know what kind of information could be gained from DNA in the future, and I don't think it's responsible to tell people to "just trust" that these companies have good intentions.
JulianMorrison 10y ago
It's ridiculous to be stingy with your DNA information. You're dropping that stuff all over any sofa you sit on. It's not you (any more than your twin is you) and it's not yours in any proprietorial sense, it's just data. Chill and let the nice scientists study it. So far as I'm concerned, if they can use my information to help study medical stuff, it's entirely cool by me.
- jomamaxx 10y ago
  That's great, but it's your choice. Also - that my DNA is on my sofa does not mean it's being published, sold, and used for purposes beyond my expectations.
  - ramblerman 10y ago
    I can somewhat understand the privacy implications, but if your DNA samples are anonymous and hold a cure to cancer or some other disease it belongs to humanity, imo.
  - eggie 10y ago
    You're forgetting the other point that the poster made, that your DNA is no more yours than your grandparents', or cousins, or any other ancestor or distant relative that shares bits of their genome with you. By the way, we are all related, and virtually everything in you is not unique. There are maybe 50-100 point mutations out of 6 billion that are unique to you. And anyway, what's the point of your genome unless you can compare it to others. So, share already. We're all just remixes of each other.
    - jomamaxx 10y ago
      "You're forgetting the other point that the poster made, that your DNA is no more yours than your grandparents', or cousins, or any other ancestor or distant relative that shares bits of their genome with you." No, my DNA is distinct from theirs, and it's 'mine'. :) Those 50-100 points identify me, uniquely.
ageofwant 10y ago
Very presumptuous article, not that that's new. When I paid my $100 several years ago I hoped and expected that my data would be sold of as many times as possible. So much more good can come of it than bad. Insurance companies can and do insist on health checks before they insure you, unless prevented by legislation. This is not new.
phkahler 10y ago
Does 23 and me actually sequence your DNA? I thought they just looked for a whole bunch of specific gene variants with known effects or associations.
palmdeezy 10y ago
Is it anonymized? I do wonder if the costs are or will one day be worth the personal gain?
deleted 10y ago
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155 points by chmars 10y ago

Would be better to link directly to the original article/source? http://gizmodo.com/of-course-23andmes-business-plan-has-been-to-sell-your-1677810999 http://gizmodo.com/of-course-23andmes-business-plan-has-been...

nolepointer 10y ago
Yeah, and that article was published last year ...
- binaryanomaly 10y ago
  Right. But still makes it to the top ;)

deleted 10y ago

[deleted]

Fishman343 10y ago

This sort of data is exactly what I would not want to entrust to any organisation in the midst of all of the leaks and hacks we are seeing in the news. Let alone having them sell it legally to god knows who... I remember reading about a hack/leak of, I think around 20,000 people's fingerprint data from the US government, and thinking to myself about the consequences of this biological data falling into the wrong hands. If there are any spies in that list and any country, say China, gets a hold of it, there is no way to update that spy's security, you can't change their fingerprints the same way I can think of a new password after a hack. I might not be worried about anyone seeing my DNA profile at the moment, but maybe I will be in the future, and once the data is out there it can't be taken back or changed on my end.

toomuchtodo 10y ago
My entire genome is publicly available through Harvard's Personal Genome Project. I weighed the pros and cons, and settled on helping contribute to progress was more important than my fear of the unknown future.
- deleted 10y ago
  [deleted]
- Fishman343 10y ago
  I do appreciate that there is a lot of public good being done with the information, my comment came off more doom-and-gloomy than I had hoped. It just seems a bit risky to me, its the sort of thing that can't really be anonymous and that gets my hackles up so to speak.
- dekhn 10y ago
  Me too! https://my.pgp-hms.org/profile/hu80855C https://my.pgp-hms.org/profile/hu80855C let me know if you find anything interesting. When I had it sequenced, the genetic counsellors said I had none of the common disease risk factors, which seemed a bit surprising. I have a background in biology, have done extensive work with genomic data, and weighed the future risks pretty carefully. Ultimately I didn't see any real problem with posting my raw BAM files and I assume a dedicated person could identify me if they tried.
- CaptSpify 10y ago
  And if you want it to be available, it should be. I haven't seen anyone arguing that people who consent shouldn't be able to make their info public. My concern is for people who don't want that info to be made public
dekhn 10y ago
The data has been anonymized (donor name removed), deidentified (records which could be used to derive the donor name have been removed or otherwise modified), and aggregated (grouped across multiple individuals). It's unlikely (although not impossible) to take that data and convert it to DNA profiles of individuals.

eli 10y ago

What wrong with using aggregate dna data to help target cures for Parkinson's?

dd9990 10y ago
Even with the best of intentions things can go wrong and there are lots of unanswered questions in this emerging field. I'm sure the medical organizations involved are very aware of these problems, like protecting the privacy of those in the datasets. We've seen medical data de-anonymised in the past - it's not a trivial problem to solve. Likewise there are moral issues. What happens if you discover X% of people in the study have an extremely high risk of developing Parkinson's? Do you contact them? Do they have the right to know? Do you have the right to tell them? Would they even want to know? These are questions we're only starting to think about now.
- corecoder 10y ago
  > Do you have the right to tell them? This I don't understand: what does it mean? What is the right to warn people of dangers? How do you earn such a right? How do you lose it? Have someone else tell them if you think you haven't the right somehow.

aub3bhat 10y ago

So on one side journalists lament lack of new drug development & just the shoddy state of healthcare tech, while as soon as any new data that can potentially unlock new drug targets (23andMe) or provider better support (Google DeepMind Health) is introduced, Such efforts are quickly demonized with spread of Fear, Uncertainty and Doubt. Rather than asking important questions such as at which level the "aggregate" data is shared, or what safeguards exists, the blog post and source "Gizmodo" article is quick to jump gun and spread fear (You are the product / you are being sold!!!). These posts are targeted to derive same emotional response that drive anti-vaxxers / anti-GMO nuts.

electic 10y ago
These blog posts are designed to generate clicks sadly.
biomcgary 10y ago
The 23andMe data is amazingly useful for academic research too. I am familiar with a study (but not involved), soon to be published, that used their data to identify genetic variants responsible for a particular problem with pregnancy. The price was phenomenally lower than a more typical genome wide association study (GWAS) of which there are several publicly funded efforts. The results are much cleaner than previous studies simply due to the large number of individuals involved. The privacy controls are very stringent too.
- bradleyjg 10y ago
  No issue with the fact that it's a convenience sample?
- jonlucc 10y ago
  They've also been offering to pharma companies the ability to help find cohorts of patients to make clinical trials much cheaper. Say we have a drug we think works in a sliver of patients with muscular dystroph; we can either go screen tons of diagnosed patients to find the cohort we think will respond, or we can go ask 23andMe to send some patients with the required genetic profile our way.

j2kun 10y ago

23andme has a very clear privacy policy on their landing page. So what's this all about?

criddell 10y ago
It's kind of funny that the blogger puts "those who speak do not know" at the top of one of his articles where he apparently has quite a bit to say.
pdkl95 10y ago
A privacy policy is not informed consent. Nobody would have a problem if they asked first. The tech industry likes to act as if they have a right to use any data they get their hands on for any purpose; why wouldn't you expect a hostile reaction when people see their data being used without their explicit permission? A common response is that nobody would participate with a proper opt-in system. That lack of participation is sending a clear message.
- ig1 10y ago
  IIRC 23andme gives you a very specific "agree for this data to be used for medical research" consent prompt.

dominotw 10y ago

I have had 23andme for last 7-8 years; I've also paid for all their upgrades over the ye.ars I've not gotten a single useful information out of it and I don't hope to in near future. It got a bunch of useless information like ear wax type, hair color ect right but overall its waste of time and money. Privacy concerns over ppl exploiting raw data are overblown given its impossible to draw any useful conclusions from just raw data. You can find bunch of raw 23andme exports on github.

a13n 10y ago

The data is anonymized, who cares? Good for 23andMe. We could learn very important things from that data in aggregate. We need more aggregated data in healthcare.

dd9990 10y ago
Anonymization of data is not a simple task. Even with the noblest of intentions things can go wrong. See the problems with the sharing of medical data in the UK and examples from the US [1]. [1] http://arstechnica.com/tech-policy/2009/09/your-secrets-live-online-in-databases-of-ruin/ http://arstechnica.com/tech-policy/2009/09/your-secrets-live...
krick 10y ago
What do you mean "anonymized"? It's your DNA, it basically is you. Much more than your name, email address, or whatever you consider de-anonimization.
- avree 10y ago
  It's not you until you tie it to your identity. I leave "DNA" all over; people cannot match it to me unless they have an existing sample that is definitely from me.
  - DanBC 10y ago
    They can get close if they have your relative's DNA. http://www.bbc.co.uk/news/uk-england-somerset-36245888 http://www.bbc.co.uk/news/uk-england-somerset-36245888 A man killed a girl. His DNA was gathered at the scene. 26 years later his daughter committed a minor crime, and had her DNA taken as part of her arrest, which led them back to him.
ceejayoz 10y ago
Anonymized doesn't always cut it. https://en.wikipedia.org/wiki/AOL_search_data_leak https://en.wikipedia.org/wiki/AOL_search_data_leak

stevecalifornia 10y ago

The pros of using 23andMe has vastly outweighed any cons, real or hypothetical. Here is a pro: I was able to print out a 3 page report to give to my new doctor that described what medications I had a low / high tolerance for and what medical conditions to look out for as I grow older. My doctor was floored-- and as a result we do a few extra tests every year to keep track of a potential eye condition I am at a higher risk for. So what is the potential cons? Perhaps my DNA data is used to help make drugs to help other people? Even if it's wasn't aggregated and my data wasn't anonymous I'm still unsure what I am supposed to be afraid of.

mmcconnell1618 10y ago
23andme doesn't provide this data. I'm assuming you exported your data to a 3rd party service. Could you share which one?
- Roritharr 10y ago
  +1 from a 23andme customer who still thinks this was a questionable "funvestment"
- RMacy 10y ago
  They used to
- legaultm 10y ago
  23andme does provide health data in other countries like Canada.
  - burfog 10y ago
    I wonder what it would take to convince them that you are in Canada.
- Symmetry 10y ago
  If you signed up for 23andMe when it was considered a medical testing lab rather than a medical device you can get a lot of extra information. I've heard you can use Genotation[1] to get something similar but I'm not sure how good a job they do on explaining things or telling you which parts come from multiple large studies and which are more speculative. http://genotation.stanford.edu/#start http://genotation.stanford.edu/#start

gwern 10y ago

This is really not surprising. Media coverage of 23andMe all the way back to its founding has said that it was offering SNP testing at-cost to build a big database which can be used for all sorts of things (although they were probably too optimistic about the usefulness of it). The real scandal is how 23andMe has published appallingly little research based on it. When I signed up with 23andMe, I was totally fine with them selling my genetic data; because I expected them to be participating in research. Instead, what we get is occasional cutesy stuff, occasional contribution of a cohort to other researchers, and a few papers a year on not particularly interesting topics like coffee consumption (some hits, naturally, since everything is heritable, but not an important topic). Contrast this to the UK Biobank which has been - with a fraction of the 23andMe sample size - releasing blockbuster paper after blockbuster paper over the past year alone!

biomcgary 10y ago
I think it may just be taking time for scientists to start working with their pipeline, which is somewhat cumbersome simply due to their privacy controls. I predict we will start seeing more studies soon. See my other comment on this thread for details about one of those studies.
- gwern 10y ago
  That seems highly unlikely. 23andMe has been in operation since 2006. They hit UK Biobank sample size sometime around 2010. The Biobank researchers have been managing to pump out paper after paper (check out Bioxiv!) over the past half-year even though as far as I can tell, their genetics pipeline only started yielding data back around October 2015. How long are we supposed to wait on 23andMe before concluding that they just aren't making very good use of their data from the perspective of the public interest and have focused on commercialization?

mevile 10y ago

Nobody is forcing anyone to use 23andme. If this bothers you don't use this service?

civilian 10y ago
We didn't know they would do this when we signed up and gave them our DNA years ago?

Symmetry 10y ago

When I signed up for 23andMe at least half of my motive was to help them discover new things about people's genomes including the development of new drugs. So good for them, basically.

__a__ 10y ago

Is your DNA is now the "intellectual property" of a company? The company sells rights to access sequence infromation from your DNA, i.e., their intellectual property, for up to 60 million. Do you get any of that "up to 60 million"? And why should you? It's not like it's your DNA. You sold it. Well, actually you paid a fee to some company -- that has been threatened with being shut down by the FDA -- to take your DNA. Who started this company? Ex-wife of Google founder. According to Wikipedia the fee has jumped from $999 down to 99 then to 199. So what's the service worth? I don't know but I have a feeling it ends in 9. Personal genomics is a great idea that has been around for a long time. Well before Google and Facebook. But this company, applying "the Google approach" to biotech, was never a good idea. That's only my opinion. It's quite possible each of the 1 million or so donors was happy to donate their DNA "to science". The issue I have with "the Google approach" is that the company is not doing much except collecting data and running cheap tests -- and of course marketing. There's no world class research at 23andme. God only knows what they'll do with the money they get from selling people's personal information. They are just middlemen, selling off people's personal information for a easy profit. Very innovative.

chillingeffect 10y ago

Most people are missing that by only making this info available at market rates, rather than as a non-profit, it doesn't benefit the general good/public equally. It benefits incumbents asymmetrically. Furthermore, by only collecting data from those with excess income, afflictions of the poor will remain less diagnosable. There will be some trickle-down into poorer people, but if you think it "doesn't hurt to help people get healthier," try to see you're mainly helping wealthy people get wealthy people better. It's a slow-motion form of eugenics. We all know how well trickle-down theories work.

jacquesm 10y ago

It's fairly obvious by now that 23andme is just a collector of data, not a source of useful research or actual results. The best bit: you pay to give them your data. In that sense Google and Facebook are more fair, they give a free service and you pay with your data. For their customers (the ones who give them samples) 23andme is expensive infotainment, which will worse case lead to a whole pile of un-necessary tests done by a generation of empowered hypochondriacs.

dgacmu 10y ago
I don't see why you're drawing that conclusion. As a customer, I'm happy with what I got: (1) Fairly high-confidence data about known "big" inherited conditions. This was useful when my wife and I decided to have a child - there were several things we could safely rule out screening for. No surprises, but "no surprises" was what we were looking for. :) (2) lower-confidence data for less-substantiated issues (who knew? I'm a fair bit more likely to get venous thromboembolism than average. So now I take more walks up & down the aisle when I'm on an airplane.). Is this life-changing or even particularly important? Nah. But on the other hand, it costs me nothing - and probably makes me happier - to change my behavior to wiggle around more. :) (3) Some infotainment, primarily in the ancestry information. It was interesting. <shrugs> (4)a copy of my SNPs that I store locally and may someday upload to another analysis service.
- jacquesm 10y ago
  > Fairly high-confidence data about known "big" inherited conditions. This was useful when my wife and I decided to have a child - there were several things we could safely rule out screening for. No surprises, but "no surprises" was what we were looking for. :) I'm sure you felt the need to get a second scan from a different company to confirm the negative results because this was so incredibly important to you.
  - dgacmu 10y ago
    The sarcastic tone of your response suggests that you're expecting me to be an idiot and/or a hypochondriac. I may or may not be a typical 23andme customer (and wasn't suggesting I was), but we had very specific, actionable reasons for using their services: Of course we didn't do a second scan, that would be silly. My wife carries some recessive genes for inherited conditions common among Ashkenazi jews, and because I don't know half of my ancestry, we simply wanted to confirm that I was negative for them. They're not particularly common, hence "no surprises." Checking the embryo for diseases such as Tay-Sachs typically require chorionic villus sampling, which comes with a 1-2% risk of causing a miscarriage. Spitting into a tube and sending it for SNP testing is cheap, easy, and low-risk. Had I been a carrier, we would have had CVS performed. The 23andme results let us safely skip having an extra procedure performed. Net win. (Note that this is not going out on a limb: screening for Tay-Sachs is strongly recommended by ACOG when both parents are known to be carriers.) There are screening panels designed to specifically hit only the carrier status markers we were interested in, but for me, the extra ancestral information tipped the scale in favor of the more general information.

gettingbored 10y ago

I'm sad to see such poorly written blog post with a clickbait title get all these points. I'd suggest that you instead read this well thought out (and rather complete) paper about the biomedical ethics at play within 23andMe's two-sided market business model. (no paywall to download the paper) https://bmcmedethics.biomedcentral.com/articles/10.1186/s12910-016-0101-9 https://bmcmedethics.biomedcentral.com/articles/10.1186/s129...

Kequc 10y ago

As a 23andme customer I guess this means that drugs that suit my DNA are therefore as a result of this study going to benefit me before anyone else. I don't mind if my DNA is used for scientific research and I don't call that a moral grey area in any way. It's data. Good for them and for me.

kjenkins 10y ago

If you're interested in personal DNA sequencing but don't want your genetic data shared (or you want to be able to analyze your entire genome, not just the small bit 23andMe does), check out Guardiome. This is their entire mission statement as a company.

dgcoffman 10y ago

Happy to participate. You're welcome, whoever benefits.

dgcoffman 10y ago

Happy to participate. You're welcome, whoever benefits.

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GoodForThem 10y ago

Lots of posts in this thread feel like distributed talking points, and seem to have been put together using a similar formula. "As a customer of 23andme" ... something about this benefiting everyone ... "good for them" ... something about clickbait (attack the source) There are legitimate privacy concerns here, and I really wish the tech industry would stop shitting on the concept of privacy and attempting to make anyone who brings those concerns up out to be an insane tinfoil hatter. We really don't know what kind of information could be gained from DNA in the future, and I don't think it's responsible to tell people to "just trust" that these companies have good intentions.

JulianMorrison 10y ago

It's ridiculous to be stingy with your DNA information. You're dropping that stuff all over any sofa you sit on. It's not you (any more than your twin is you) and it's not yours in any proprietorial sense, it's just data. Chill and let the nice scientists study it. So far as I'm concerned, if they can use my information to help study medical stuff, it's entirely cool by me.

jomamaxx 10y ago
That's great, but it's your choice. Also - that my DNA is on my sofa does not mean it's being published, sold, and used for purposes beyond my expectations.
- ramblerman 10y ago
  I can somewhat understand the privacy implications, but if your DNA samples are anonymous and hold a cure to cancer or some other disease it belongs to humanity, imo.
- eggie 10y ago
  You're forgetting the other point that the poster made, that your DNA is no more yours than your grandparents', or cousins, or any other ancestor or distant relative that shares bits of their genome with you. By the way, we are all related, and virtually everything in you is not unique. There are maybe 50-100 point mutations out of 6 billion that are unique to you. And anyway, what's the point of your genome unless you can compare it to others. So, share already. We're all just remixes of each other.
  - jomamaxx 10y ago
    "You're forgetting the other point that the poster made, that your DNA is no more yours than your grandparents', or cousins, or any other ancestor or distant relative that shares bits of their genome with you." No, my DNA is distinct from theirs, and it's 'mine'. :) Those 50-100 points identify me, uniquely.

ageofwant 10y ago

Very presumptuous article, not that that's new. When I paid my $100 several years ago I hoped and expected that my data would be sold of as many times as possible. So much more good can come of it than bad. Insurance companies can and do insist on health checks before they insure you, unless prevented by legislation. This is not new.

phkahler 10y ago

Does 23 and me actually sequence your DNA? I thought they just looked for a whole bunch of specific gene variants with known effects or associations.

palmdeezy 10y ago

Is it anonymized? I do wonder if the costs are or will one day be worth the personal gain?

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