12 ms·

Make no mistake about what is happening here. GSK is buying access to all of the genetic data that 23andMe has. This is why I am wary to use any 23andMe type of

Make no mistake about what is happening here. GSK is buying access to all of the genetic data that 23andMe has. This is why I am wary to use any 23andMe type of service. "The partners plan to use 23andMe’s data to jointly discover drug targets." They will claim all kinds of protections of course, but it is only a matter of time until genetic data starts being resold.

snarf21 8y ago
Agreed, at best it is a picture of the market for drug X at the genetic level. My biggest fear is that my close family members use this service exposing key data about me and I can't really prevent it, only encourage them not to.
frgtpsswrdlame 8y ago
Both of my parents have used 23andMe. In that case although I've never consented 23andMe knows quite a bit about my genetic profile. I wonder if this sort of "inferred" data is going to be traded.
- deleted 8y ago
  [deleted]
- kgilpin 8y ago
  Or used against you in a court of law.
bmmayer1 8y ago
> genetic data starts being resold Or hacked.
- mtgx 8y ago
  That's a given.
- searine 8y ago
  Honest question. What is a hacker going to do with my genetic data? What threat does having my medical predispositions publicly available have? Is the hacker going to call me up and suggest I start taking high blood pressure medication?
  - jonknee 8y ago
    It's probably not the juiciest target, but I could see intelligence agencies wanting it. Combine it with the OPM hack of all security clearances and you could in theory use it to find family members of spies, people in high positions who have secret children, etc etc. Imagine if you had Trump's DNA and could then search a massive database to find out if he has any kids we don't know about...
    - endorphone 8y ago
      If intelligence agencies wanted DNA it seems remarkably easy for them to collect. We leave our DNA everywhere.
      - jonknee 8y ago
        Sure, but it would be a massive amount of work to go collect millions of samples and sequence them. Like how researchers are using the data to solve crimes, you need a large set of data to get good results out of. In my scenario you would collect the DNA of your target (say, Trump) and then use the 23andMe data to try and dig up dirt on relatives (say, his illegitimate children).
  - bkanber 8y ago
    We don't know yet. But, for instance, the Cambridge Analytica data is nearly a decade old, and we didn't know back then that it could be used to (potentially) hijack a Presidential election. It's not so much a matter of what a hacker could do with this data today, but rather in 10 or 20 years.
  - mLuby 8y ago
    We've established the genetic data are valuable in the aggregate. Also since we're talking criminals, blackmail: eg tell your employer about your predisposition to violent mental illness or reveal your kids aren't actually your spouse's.
deleted 8y ago
[deleted]
koolba 8y ago
Imagine the possibilities of direct to consumer targeted marketing: “Based on your genetic profile you’re 27% more likely to develop ________, talk to your doctor about how GSK’s _________ can help”
- stanfordkid 8y ago
  Why is that a bad thing? Wouldn't want it popping up while I'm looking for dinner recipes, but it's a hell of a lot more useful than shoe ads. It needs to be deeply regulated -- but most ads indicating health benefits already are.
  - DanBC 8y ago
    Because over-testing, over-diagnosis, and over-treatment are all associated with harm. People bang on about early intervention, and it's useful for some stuff, but for a lot of stuff there's no evidence of a reduction in all cause mortality.
    - jgust 8y ago
      Not to mention that the majority of modern pharmaceuticals are focused on treating symptoms instead of causes. Insert argument about sick people being more profitable, etc.
    - rpedela 8y ago
      Given current diagnostic technologies, correct. I think genetic data and other types of bio data can be used to invent significantly better diagnostic tools that would reduce or eliminate the problems you talk about. For example, we currently do not have a diagnostic test that can tell the difference between a virus or bacteria so physicians prescribe antibiotics just in case. If we did then we could reduce the use of antibiotics. Genomic sequencing won't help this case specifically, but sequencing at the proteomic or metabolic level may.
  - c2h5oh 8y ago
    Off the top of my head: 1. A lot of people come to a doctor with a specific prescription medication in mind based on ads alone and many doctors happily oblige and possibly even receive kickbacks from pharma. How often is medication prescribed for a problem that could have been left alone? I suspect A LOT, based on how over-prescribed addictive and dangerous opiate painkillers are in USA. We'll now be corralling those people not just on conditions they have, but also ones there is some research suggesting they are a higher risk to get. Maybe they'll even start taking something preemptively, because they have a 200% higher than average chance of developing a condition that affects 1 in 1M... 2. Once your genetic traits data gets to the adtech it's a matter of time before you'll see online gambling ads targeted based on research like this https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3638385/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3638385/ and similar things 3. Negative targeting could also become a thing: - how about you don't show health insurance ads based on genetic markers that can result in high coverage costs? or limiting your recruitment ads to potential employees that aren't likely to have or develop diabetes? - just checking for lactose tolerance gene would exclude most of worlds non-white population - would that be OK? that same check could be used for medication ad targeting - wouldn't even have to extended dataset I'm fairly sure I could get you a hundred examples how it could go terribly wrong if I had a couple hours.
hkmurakami 8y ago
I wonder if this was in 23&Me’s initial pitch to investors.
- stochastic_monk 8y ago
  No doubt. The same is true of Guardant Health (Roche) and Foundation One (whom I assume were bought by someone else). Give away or sell tests at a loss to vulnerable cancer patients in search of hope, hoard the data, and sell it to the highest bidder.
rch 8y ago
Same. I also worry about the genetic equivalent of FB's shadow profiles since many of my family members have used the service.
wyldfire 8y ago
> it is only a matter of time until genetic data starts being resold. Is there a way for them to use the data "to jointly discover drug targets" in aggregate without names/identifiers?
mcculley 8y ago
I don't understand these concerns. I have published my data from 23andMe (https://enki.org/2017/10/17/publishing-my-genome/ https://enki.org/2017/10/17/publishing-my-genome/) (https://github.com/mcculley/genes-genes https://github.com/mcculley/genes-genes). Can you share what you think the bad outcomes would be? What am I missing? Edit: As people bring up the insurance risk, yes I did consider that and mention it in my post. I am personally not concerned about it and think the advantages outweigh the risk. Besides, I think insurances companies are going to have all the data soon anyway. If every time I get a blood test, they have a chance to capture my DNA, how can I stop them?
- ryanmerket 8y ago
  Don’t you think insurance companies might want that data to price your coverage for their optimal margins?
  - mcculley 8y ago
    Yes, I mention this in my post.
- mattnewton 8y ago
  Insurance is the first one that pops into my mind. That kind of data changes their bet on your risks heavily into their favor and can disadvantage you if your genes show anything corroleated with late onset diseases. Depending on how this information is regulated, it could also affect the insurance for your biological children. For more hypothetical societal risks, I’ll cite the movie Gattica where DNA credentialism has created an underclass of people who can’t afford genetic manipulation at birth of their children. If your DNA is found wanting in that society it could be used against you in job applications, rental applications, etc. Currently (IANAL) but I don’t think this would be legal, but once your information is out there, it’s rather hard to bottle back up.
  - mcculley 8y ago
    I mention the insurance risk in my post. Yes, I do think insurance companies will try to use this data. I don't see how to avoid it though. It seems to me that it is inevitable that they will get my DNA at some point. That said, I buy insurance for the unknown risks. If I had a known condition, I would expect that to be factored into the price.
aaavl2821 8y ago
Using genetic data to find new drugs strikes me as a very good use of this data. Medical data is essential to the process of finding new drugs and treating patients and is highly regulated. I think you're right to be concerned about sharing of genetic data, but conflating facebook / google data sharing practices with medical data sharing is not appropriate If the concern is that 23and me may bring the google / FB approach to personal data to healthcare then i share your concern
- searine 8y ago
  Agreed. People underestimate how excruciating it is to collect large sample-sizes of genetic data. The database 23andMe has is so stupidly valuable because 1. the sequencing is already done (and paid for) and 2. They can follow up with surveys electronically. This kind of voluntary ancestry service will probably be the only way we will ever be able to collect the millions of samples needed for powered WGS GWAS analysis.
  - binarymax 8y ago
    Given the time and cost associated with getting the data and having it in a consistent and usable format, $300MM seems like a huge bargain!
  - aaavl2821 8y ago
    I agree 23 and me database is valuable but more for the second reason I think the 23 and me data is not sequencing data but genotype data. So it only looks at a certain type of mutation in a limited set of ~500k known mutations. I may be wrong so please correct me if so. So you won't find as many rare mutations in this data, or non-SNP mutations. Also I don't think they have robust clinical data for all subjects, it's just self reported. Again I may be wrong, I haven't done a 23 and me This is a big deal for drug development. Each drug basically targets one protein. So you need a genetic marker that has a large effect size and is well correlated with a clinical phenotype. Not having clinical data is a big issue here. Also, 23 and mes database is not designed to find large effect size mutations -- their advantage is scale, and I think they only measure known mutations, so they are good at picking up common mutations with small effect sizes in common disease. The depression study they did is a good example of this application But that type of study is low value for drug dev. You want large effect sizes. So if you have a big dataset, you want to find rare mutations with large effect sizes that are linked to extreme phenotypes, not common mutations with low effect size linked to common phenotypes. Basically finding more PCSK9 type mutations. Having only genotype data rather than sequencing data really hurts here That's why I much prefer something like the Regeneron Genetic Center to 23 and me. They get robust clinical data, do while exome sequencing, and collect data from targeted populations where signalnis easier to discover. In fact GSK was part of the RGC consortium but dropped out, dunno why. This may be their "rebound" from that Again my assumptions about 23andme may be off bc I haven't used their product
dekhn 8y ago
You agreed to that when you signed up!
Krasnol 8y ago
This data is a wet dream for a racist Government.
chrisbaglieri 8y ago
I am always fascinated by these concerns. The data available on you today (financial history, social data, search histories) is more complete, concrete and actionable than one's genomics data. I say this as someone who works in this area.
- dhimes 8y ago
  Today it's more actionable. In the future, maybe not. And not only is the person signing up, but he or she is also signing up his/her offspring.
- thinkingemote 8y ago
  "I have lost all my privacy already and this is another dataset that I have no say over so why fight? You are powerless regardless. Oh and I work for the companies that benefit from your data."
- a_136_chiffa 8y ago
  You can change your credit score, social circles or what you search. Your genome is frozen in time and is passed down to your children.
jryan49 8y ago
Even the people that opted out of sharing their DNA for research purposes?
reaperducer 8y ago
it is only a matter of time until genetic data starts being resold. Or stolen. Or both.
sbinthree 8y ago
Exactly. It's win-win-win. Anonymous genetic data is amazingly useful for various kids of biotech applications. The more people who have it and can work on it, the better. 23andMe is a great platform for collection and providing useful insights to consumers, but the big potential is having millions of people's genetic data for drugs and science. Why would this make you wary? Use a fake name if your concern is PII.
mrfusion 8y ago
Is the data really that useful? It’s just a bunch of snps. And you don’t know about what diseases the customers have (besides genetic diseases)
- klmr 8y ago
  23andme does collect such data (on a voluntary basis). So lots of their data is annotated with phenotypes. The data is tremendously useful.
meow81 8y ago
You must opt in to share your data for research. Each 23andme user has a choice. email I received from 23andme today. "Our top priority is you, the customer, and empowering you with the options to participate in research. As always, you choose whether or not to participate in research. You can choose to opt-in or opt-out at any time." If you're not a customer, might not want to throw around assumptions.

snarf21 8y ago

Agreed, at best it is a picture of the market for drug X at the genetic level. My biggest fear is that my close family members use this service exposing key data about me and I can't really prevent it, only encourage them not to.

frgtpsswrdlame 8y ago

Both of my parents have used 23andMe. In that case although I've never consented 23andMe knows quite a bit about my genetic profile. I wonder if this sort of "inferred" data is going to be traded.

deleted 8y ago
[deleted]
kgilpin 8y ago
Or used against you in a court of law.

bmmayer1 8y ago

> genetic data starts being resold Or hacked.

mtgx 8y ago
That's a given.
searine 8y ago
Honest question. What is a hacker going to do with my genetic data? What threat does having my medical predispositions publicly available have? Is the hacker going to call me up and suggest I start taking high blood pressure medication?
- jonknee 8y ago
  It's probably not the juiciest target, but I could see intelligence agencies wanting it. Combine it with the OPM hack of all security clearances and you could in theory use it to find family members of spies, people in high positions who have secret children, etc etc. Imagine if you had Trump's DNA and could then search a massive database to find out if he has any kids we don't know about...
  - endorphone 8y ago
    If intelligence agencies wanted DNA it seems remarkably easy for them to collect. We leave our DNA everywhere.
    - jonknee 8y ago
      Sure, but it would be a massive amount of work to go collect millions of samples and sequence them. Like how researchers are using the data to solve crimes, you need a large set of data to get good results out of. In my scenario you would collect the DNA of your target (say, Trump) and then use the 23andMe data to try and dig up dirt on relatives (say, his illegitimate children).
- bkanber 8y ago
  We don't know yet. But, for instance, the Cambridge Analytica data is nearly a decade old, and we didn't know back then that it could be used to (potentially) hijack a Presidential election. It's not so much a matter of what a hacker could do with this data today, but rather in 10 or 20 years.
- mLuby 8y ago
  We've established the genetic data are valuable in the aggregate. Also since we're talking criminals, blackmail: eg tell your employer about your predisposition to violent mental illness or reveal your kids aren't actually your spouse's.

deleted 8y ago

[deleted]

koolba 8y ago

Imagine the possibilities of direct to consumer targeted marketing: “Based on your genetic profile you’re 27% more likely to develop ________, talk to your doctor about how GSK’s _________ can help”

stanfordkid 8y ago
Why is that a bad thing? Wouldn't want it popping up while I'm looking for dinner recipes, but it's a hell of a lot more useful than shoe ads. It needs to be deeply regulated -- but most ads indicating health benefits already are.
- DanBC 8y ago
  Because over-testing, over-diagnosis, and over-treatment are all associated with harm. People bang on about early intervention, and it's useful for some stuff, but for a lot of stuff there's no evidence of a reduction in all cause mortality.
  - jgust 8y ago
    Not to mention that the majority of modern pharmaceuticals are focused on treating symptoms instead of causes. Insert argument about sick people being more profitable, etc.
  - rpedela 8y ago
    Given current diagnostic technologies, correct. I think genetic data and other types of bio data can be used to invent significantly better diagnostic tools that would reduce or eliminate the problems you talk about. For example, we currently do not have a diagnostic test that can tell the difference between a virus or bacteria so physicians prescribe antibiotics just in case. If we did then we could reduce the use of antibiotics. Genomic sequencing won't help this case specifically, but sequencing at the proteomic or metabolic level may.
- c2h5oh 8y ago
  Off the top of my head: 1. A lot of people come to a doctor with a specific prescription medication in mind based on ads alone and many doctors happily oblige and possibly even receive kickbacks from pharma. How often is medication prescribed for a problem that could have been left alone? I suspect A LOT, based on how over-prescribed addictive and dangerous opiate painkillers are in USA. We'll now be corralling those people not just on conditions they have, but also ones there is some research suggesting they are a higher risk to get. Maybe they'll even start taking something preemptively, because they have a 200% higher than average chance of developing a condition that affects 1 in 1M... 2. Once your genetic traits data gets to the adtech it's a matter of time before you'll see online gambling ads targeted based on research like this https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3638385/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3638385/ and similar things 3. Negative targeting could also become a thing: - how about you don't show health insurance ads based on genetic markers that can result in high coverage costs? or limiting your recruitment ads to potential employees that aren't likely to have or develop diabetes? - just checking for lactose tolerance gene would exclude most of worlds non-white population - would that be OK? that same check could be used for medication ad targeting - wouldn't even have to extended dataset I'm fairly sure I could get you a hundred examples how it could go terribly wrong if I had a couple hours.

hkmurakami 8y ago

I wonder if this was in 23&Me’s initial pitch to investors.

stochastic_monk 8y ago
No doubt. The same is true of Guardant Health (Roche) and Foundation One (whom I assume were bought by someone else). Give away or sell tests at a loss to vulnerable cancer patients in search of hope, hoard the data, and sell it to the highest bidder.

rch 8y ago

Same. I also worry about the genetic equivalent of FB's shadow profiles since many of my family members have used the service.

wyldfire 8y ago

> it is only a matter of time until genetic data starts being resold. Is there a way for them to use the data "to jointly discover drug targets" in aggregate without names/identifiers?

mcculley 8y ago

I don't understand these concerns. I have published my data from 23andMe (https://enki.org/2017/10/17/publishing-my-genome/ https://enki.org/2017/10/17/publishing-my-genome/) (https://github.com/mcculley/genes-genes https://github.com/mcculley/genes-genes). Can you share what you think the bad outcomes would be? What am I missing? Edit: As people bring up the insurance risk, yes I did consider that and mention it in my post. I am personally not concerned about it and think the advantages outweigh the risk. Besides, I think insurances companies are going to have all the data soon anyway. If every time I get a blood test, they have a chance to capture my DNA, how can I stop them?

ryanmerket 8y ago
Don’t you think insurance companies might want that data to price your coverage for their optimal margins?
- mcculley 8y ago
  Yes, I mention this in my post.
mattnewton 8y ago
Insurance is the first one that pops into my mind. That kind of data changes their bet on your risks heavily into their favor and can disadvantage you if your genes show anything corroleated with late onset diseases. Depending on how this information is regulated, it could also affect the insurance for your biological children. For more hypothetical societal risks, I’ll cite the movie Gattica where DNA credentialism has created an underclass of people who can’t afford genetic manipulation at birth of their children. If your DNA is found wanting in that society it could be used against you in job applications, rental applications, etc. Currently (IANAL) but I don’t think this would be legal, but once your information is out there, it’s rather hard to bottle back up.
- mcculley 8y ago
  I mention the insurance risk in my post. Yes, I do think insurance companies will try to use this data. I don't see how to avoid it though. It seems to me that it is inevitable that they will get my DNA at some point. That said, I buy insurance for the unknown risks. If I had a known condition, I would expect that to be factored into the price.

aaavl2821 8y ago

Using genetic data to find new drugs strikes me as a very good use of this data. Medical data is essential to the process of finding new drugs and treating patients and is highly regulated. I think you're right to be concerned about sharing of genetic data, but conflating facebook / google data sharing practices with medical data sharing is not appropriate If the concern is that 23and me may bring the google / FB approach to personal data to healthcare then i share your concern

searine 8y ago
Agreed. People underestimate how excruciating it is to collect large sample-sizes of genetic data. The database 23andMe has is so stupidly valuable because 1. the sequencing is already done (and paid for) and 2. They can follow up with surveys electronically. This kind of voluntary ancestry service will probably be the only way we will ever be able to collect the millions of samples needed for powered WGS GWAS analysis.
- binarymax 8y ago
  Given the time and cost associated with getting the data and having it in a consistent and usable format, $300MM seems like a huge bargain!
- aaavl2821 8y ago
  I agree 23 and me database is valuable but more for the second reason I think the 23 and me data is not sequencing data but genotype data. So it only looks at a certain type of mutation in a limited set of ~500k known mutations. I may be wrong so please correct me if so. So you won't find as many rare mutations in this data, or non-SNP mutations. Also I don't think they have robust clinical data for all subjects, it's just self reported. Again I may be wrong, I haven't done a 23 and me This is a big deal for drug development. Each drug basically targets one protein. So you need a genetic marker that has a large effect size and is well correlated with a clinical phenotype. Not having clinical data is a big issue here. Also, 23 and mes database is not designed to find large effect size mutations -- their advantage is scale, and I think they only measure known mutations, so they are good at picking up common mutations with small effect sizes in common disease. The depression study they did is a good example of this application But that type of study is low value for drug dev. You want large effect sizes. So if you have a big dataset, you want to find rare mutations with large effect sizes that are linked to extreme phenotypes, not common mutations with low effect size linked to common phenotypes. Basically finding more PCSK9 type mutations. Having only genotype data rather than sequencing data really hurts here That's why I much prefer something like the Regeneron Genetic Center to 23 and me. They get robust clinical data, do while exome sequencing, and collect data from targeted populations where signalnis easier to discover. In fact GSK was part of the RGC consortium but dropped out, dunno why. This may be their "rebound" from that Again my assumptions about 23andme may be off bc I haven't used their product

dekhn 8y ago

You agreed to that when you signed up!

Krasnol 8y ago

This data is a wet dream for a racist Government.

chrisbaglieri 8y ago

I am always fascinated by these concerns. The data available on you today (financial history, social data, search histories) is more complete, concrete and actionable than one's genomics data. I say this as someone who works in this area.

dhimes 8y ago
Today it's more actionable. In the future, maybe not. And not only is the person signing up, but he or she is also signing up his/her offspring.
thinkingemote 8y ago
"I have lost all my privacy already and this is another dataset that I have no say over so why fight? You are powerless regardless. Oh and I work for the companies that benefit from your data."
a_136_chiffa 8y ago
You can change your credit score, social circles or what you search. Your genome is frozen in time and is passed down to your children.

jryan49 8y ago

Even the people that opted out of sharing their DNA for research purposes?

reaperducer 8y ago

it is only a matter of time until genetic data starts being resold. Or stolen. Or both.

sbinthree 8y ago

Exactly. It's win-win-win. Anonymous genetic data is amazingly useful for various kids of biotech applications. The more people who have it and can work on it, the better. 23andMe is a great platform for collection and providing useful insights to consumers, but the big potential is having millions of people's genetic data for drugs and science. Why would this make you wary? Use a fake name if your concern is PII.

mrfusion 8y ago

Is the data really that useful? It’s just a bunch of snps. And you don’t know about what diseases the customers have (besides genetic diseases)

klmr 8y ago
23andme does collect such data (on a voluntary basis). So lots of their data is annotated with phenotypes. The data is tremendously useful.

meow81 8y ago

You must opt in to share your data for research. Each 23andme user has a choice. email I received from 23andme today. "Our top priority is you, the customer, and empowering you with the options to participate in research. As always, you choose whether or not to participate in research. You can choose to opt-in or opt-out at any time." If you're not a customer, might not want to throw around assumptions.