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23andMe has signed a $300M deal with GlaxoSmithKline

189 points by dwighttk 8y ago

JofArnold 8y ago
Title requires reference to this article being from July 2018
keiferski 8y ago
Question from someone ignorant on the topic: if the US ever adopted a universal health care system in the future, would disclosures of 23andMe/Ancestry DNA to insurance companies still have negative effect? I’m assuming that under a universal system, it wouldn’t matter how severe your conditions are, as you’d be covered anyway.
- georgyo 8y ago
  A hypothetical health care system could be designed in all sorts of ways. While your gut feeling is likely correct, they could implement a system has reduced benefits for people deemed to costly to support. Or prioritize treatment of critical problems and not count preexisting conditions as critical. It is much more likely that everyone would be covered in the same exact way in my opinion though.
- MereInterest 8y ago
  At that point, from a medical perspective, I don't believe so. The other main issue would be privacy, which would not at all be affected. Under the third-party doctrine, there is no expectation of privacy when individuals share information with a third party. Therefore, that information can be demanded by police without a warrant. Having the information collected into a central location (the insurance companies) would make it easier for a large number of these requests to be filed, rather than needing to track down individual services for each investigation.
- jahaja 8y ago
  There's a lot of other non-health related insurances and more that depends on an assumed average lifespan. Mortgage/Loans, employment etc. One could become an second class citizen in such a dystopian future.
  - stochastic_monk 8y ago
    I recently watched the film GATTACA. I was shocked by how appropriate it was for our time. In the film, discrimination by genetics is, strictly speaking, against the law, but a matter of course because of how easy it is to get a sample and sequence someone. Humans are judged based on what's in their genes, not who they are. The synthetic, designed humans are classified as "valid", while those born naturally are "invalids" or "de-gene-erates". It would be quite easy for people of all walks of life to become second-class citizens due to information in their genomes if things do not change quickly.
- Someone1234 8y ago
  23AndMe/Ancestry don't reveal DNA information to insurance companies. Even if you opt into providing your DNA for research purposes, it is anonymized.
  - swixmix 8y ago
    How can my DNA be anonymized? It's a unique identifier to me and leaks traceable information about my family.
    - Someone1234 8y ago
      Because it impractical to tie the information found in the DNA back to you as an individual (e.g. name, social security number, etc). It is therefore impractical for companies to use that information to target you.
      - sorokod 8y ago
        Even if it is impractical now, is there any objective reason to believe it will remain so in the future?
        Someone1234 8y ago
        The sequenced DNA exists without any identifying information linking it to an individual. If they re-sequenced you and matched the two, they've gained nothing (since they had to re-sequence anyway), if they didn't re-sequence then they have no way of associating the two. So now, tomorrow, or into the far future the two piece of information cannot be re-associated because there's nothing to map them. The information about the link is lost. It is like asking "Can a lossy MP3 be restored to the lossless version if technology improves enough?" Nope. The information is simply gone. Same is true here, the associated link is just gone.
        Real_S 8y ago
        This is a common misconception, but you are incorrect. These data can be used to identify you, therefore they are not anonymous. If a name is removed from a file that contains zip-code, age and gender, that data is nevertheless sufficient to re-identify most people. Removing a name from a data-base does not necessarily anonymize that data-base. DNA can be used to uncover your last name and ethnicity, estimate your height, hair color, eye color and more, so anonymization is not as simple as removing a name.
Someone1234 8y ago
This article is highly disingenuous. 23andMe ask you during sign up if you wish to take part of anonymized research. They ask you again for each person whose sample you submit. You can also opt out at any time. The article author even knows this, since when they asked Ancestry (23AndMe's owner) that was exactly what they were told. So why does the article have such a hyperbolic tone and misleading information? I don't have high expectations for Business Insider but this article still disappoints me. This is tabloid level "journalism."
- eekfuh 8y ago
  AFAIK 23andme and Ancestry are competitors. This would makes sense why they asked Ancestry what they do and doesn’t use that to make the argument as each company may treat sharing differently.
  - ryanmercer 8y ago
    >AFAIK 23andme and Ancestry are competitors I'm not sure I'd call them competitors. Yes they both take your spit and process it, yes they both allow you to see potential extended family but that's about the only similarities. Ancestry added it as an extension of their genealogical services while 23andme was originally for personal medical discovery before the FDA came down on them and they had to change tactics.
- dekhn 8y ago
  writing articles that blame pharma and biotech for stealing people private data is the hot thing now. It increases page hits. Same with blaming google, facebook for stealing user data; it's the fear du jour. While there are legitimate concerns, 23&Me is pretty good in terms of privacy practices and their founders/employees are working in good faith to improve the health of humans. It's kind of sad that gets twisted into "compabnies are profiting from your personal data", because while that is true, it's not nearly as invasive or gattaca as people seem to think.
  - dhimes 8y ago
    In this case, nobody's stealing anything. People are opting to give them not only their information, but those of their descendants as well. Apparently they think that some sort of "privacy clause" (written by the corporation's lawyers no doubt) will remain intact if things get financially tight, and that the courts and governments will step in if the businesses try to take advantage of their knowledge in a way detrimental to the customer. But we all understand that technology is only going to make more information available from those samples over time. The board has a fiduciary responsibility to its shareholders, and it doesn't take a great imagination to see that if the information becomes valuable in new ways then there will be pressure to use it however they can. What we have here is a baby step.
tossaccount123 8y ago
Imagine giving your DNA to the (former)wife of a Google cofounder? Why are people surprised they would abuse your data for profit?
- SmellyGeekBoy 8y ago
  Because all of the available information indicates that this is very much not the case?
tw1010 8y ago
Makes me glad I didn't use 23andMe and makes me not ever want to use products like that in the future.
- jonlucc 8y ago
  Can I ask why? Is it because that company is profiting off of your data or something else?
  - sschueller 8y ago
    Eventually this data will get into the hands of governments and others. Who is to say that in the future you are not permitted to own a firearm (just an example ) because you have some gene that may increase your tendancy for violence (some future research show)? What about an insurance denying you becuase of a gene? That may be illegal but it's you against Goliath. How many laws are broken by banks etc. without recourse because the ones affected don't have the resources to fight it? Sure these are extremes but if this information is available, eventually it will be used and most likely first for for profit.
    - geggam 8y ago
      * side note * Government is 1 of the largest buyers of marketing data as well. They cant do the spying legally but nothing stops them from purchasing what corporations do.
    - malvosenior 8y ago
      If you were born in California after 1983, the government already has this data: https://sanfrancisco.cbslocal.com/2018/05/08/california-biobank-stores-baby-dna-access/ https://sanfrancisco.cbslocal.com/2018/05/08/california-biob...
  - windexh8er 8y ago
    I think there are some simple situations that provoke this type of response. The first is that while there are protections in place they are only paper protections. History has shown us those are not always effective. What if 23andme goes bankrupt and the data is "lost" or just sold to the lowest bidder? I am not certain of the legal loopholes present, but I wouldn't doubt we'll see a case of this happening in the next decade. The second is long term exposure to the unknown. Even if you knowingly choose to opt-in, what if that data is used against said persons at some point in the future for something they failed to consider, maybe because they couldn't know because it's not been identified as of yet? Profit isn't always the detractor. I get that these organizations need to make money. But without proper explanation (there should be a better legal framework in place for services like this that offer equal protections to both sides) and a potentially biased legal agreement, informed users will likely question the unknown of giving up information to a company who will continually be realizing ways to use your DNA for the foreseeable future. And, oh by the way, you paid them to do that. $0.02
jonlucc 8y ago
I'm not exactly an expert in this field, but I work in big pharma, and I've seen the presentation 23andMe gives to drug companies. Basically, there are two ways GSK can use your data stored at 23andMe, and both require explicit opt-in. First is that they can basically just give access to huge databases. You might be surprised at how inefficient this will probably be for target hunting. There are already lots of GWAS studies that don't result in a single viable drug target. The other way, and where I suspect the bulk of the $300M/4yrs is going, is in recruiting patients for clinical trials. GSK can tell 23andMe that they need 150 patients living near metropolitan centers who have indicated they suffer from X disease, and don't have Y mutation. This could drastically reduce the cost of recruiting for Phase 2 trials (though it may skew the patient populations in ways we haven't really had to deal with before). <edit> If I remember correctly, 23andMe contacts these potential patients to ask if they're interested in the GSK trial, then refers them to contact the GSK clinical trial site. They don't just give your phone number to GSK </edit> I guess I'm not really sure what the panic is about. First, every step is opt-in. Second, the data provided en masse is blinded to patient identity and industry standard is to disincentivize unblinding the data. Am I too close to and brainwashed by the industry to see what's wrong here?
- Real_S 8y ago
  Recruiting people for drug trials seems unlikely to be a goal, but I could be surprised. I suspect they are planning to use sequence data to find drug targets. Sequence data has more potential than GWAS ever had, e.g. finding rare mutations. "Blinded to patient identity" is true, but it can be relatively easy to re-identify these individuals using this data. So this data has your identity intertwined with potentially very private information. Some people intuitively desire to be as cautious as possible with their genetic information, and there is good reason for caution. Worst case it somehow ends up on the black market. You can't change your DNA, so if it gets out, there is no turning back.
  - iso1337 8y ago
    23andme uses genotypimg and not sequencing, so you won’t be getting those rare mutations. That’s how they can keep the price so low. I think your point still stands though, your genotype is still identifying information and should be safeguarded. https://customercare.23andme.com/hc/en-us/articles/202904600-What-is-the-difference-between-genotyping-and-sequencing- https://customercare.23andme.com/hc/en-us/articles/202904600...
perlgeek 8y ago
If you are an EU citizen, GDPR applies, which means you can request deletion of your personal data at any time (unless there is an obligation by law to keep that data, for example invoices). I just don't know how well it can be enforced with businesses that don't have an office in EU land.
pyrophane 8y ago
BTW, you can have 23andMe delete your data, including the genetic data they have stored. I did this a couple of years back and it was fairly straightforward. Sounds like it is even more so now: https://customercare.23andme.com/hc/en-us/articles/212170688-Requesting-account-closure https://customercare.23andme.com/hc/en-us/articles/212170688... Also, at the time you could download an export of your genetic data and that is probably still the case.
- wslh 8y ago
  Do you know if it's relatively easy to analyze your genetic information yourself instead of relying on a third party?
  - Someone1234 8y ago
    No, since an analysis is itself a value judgement. What I mean is that a DNA profile is becoming even more useful every day due to additional research telling us what different parts of the genome is doing and what interactions it has (with drugs, food, environment, other parts of the genome). So you can read the raw DNA sequence yourself but it is the link into thousands of pieces of academic research that is the real value delivered here. Without that it is just a bunch of letters that mean nothing.
  - afpx 8y ago
    Sure. There are lots of SNP databases out there. The NIH has a great repository, for instance. There’s even a wiki of most known SNPs, with descriptions. It’s kind of labor intensive without automation. But, I’m sure someone has written a script to compare raw SNP data to SNP databases. Things to keep in mind: 1) raw SNP data contains errors. 2) A particular SNP may be associated with condition X, but many other SNPs could be also be associated with X. And, rarely is it understood how they work together (since they’re often located in different genes). 3) a lot of SNP research is done using small samples, i.e. not much confidence. (A GWAS will produce more confidence, but also identify fewer SNPs of interest.)
  - pyrophane 8y ago
    I used Promethease: https://promethease.com/ https://promethease.com/. It basically takes your genetic information and maps it to what is in SNPedia: https://snpedia.com/ https://snpedia.com/. The problem with this approach is that what you are getting isn't really analysis, and you will get lots of conflicting data and information that is not possible to interpret without specialized knowledge. Still, it can be both fun and interesting.
Tycho 8y ago
How much of a population’s DNA needs to be mapped before you can reliably triangulate the the identity of any individual by comparing to known DNA profiles? For instance if I have two cousins on different sides in the database, can they look at my DNA and narrow down the possible matches to me and my siblings of the same sex? What about more distant relations? (I’m thinking about how police caught that serial killer recently because some of his relatives had used one of these sites)
- ssnistfajen 8y ago
  It has sort of happened already: https://www.scientificamerican.com/article/how-to-identify-almost-anyone-in-a-consumer-gene-database/ https://www.scientificamerican.com/article/how-to-identify-a...
- Real_S 8y ago
  This depends entirely on the population. Rare individuals with unique DNA markers are easier to re-ID than individuals with more common DNA markers. But also consider that ethnicity is relatively easy to get from genetic data. So individuals with unique ethnic combinations can be trivial to identify by their genetic data. Now consider that genetic data can also be used to predict traits such as height, hair color, eye color, etc [0]. Reliable triangulation is already possible, and becomes increasingly more accurate as more data becomes available. 0: E.g.this company- https://snapshot.parabon-nanolabs.com/ https://snapshot.parabon-nanolabs.com/
- gwern 8y ago
  Very roughly, ~2%: https://www.biorxiv.org/content/early/2018/06/19/350231 https://www.biorxiv.org/content/early/2018/06/19/350231
- dangrossman 8y ago
  That's how a local cold murder case was solved. DNA from a 25-year-old crime scene was run against a genealogy database, and found a familial match. Police set up a sting to obtain DNA from that person's relatives. They found a DNA match with the brother's water bottle taken from the trash. The brother had never submitted a DNA sample to any databases himself. https://lancasteronline.com/news/local/christy-mirack-s-slaying-solved-with-arrest-of-lancaster-county/article_f05a2ee4-78b2-11e8-ad10-4382ef42f96d.html https://lancasteronline.com/news/local/christy-mirack-s-slay... The alleged killer was the DJ at my wedding. The trial's in May.
shadowtree 8y ago
If this triggers you, you kind of missed the fact that Roche was an investor in 23andMe hears ago. Plus 23andMe is located in the Genentech/Roche campus. Which is the funny bit given GSKs takeover.
- dahinds 8y ago
  23andMe headquarters is located in downtown Mountain View, and we have a lab in South San Francisco. Nothing on the Genentech campus.
xiphias2 8y ago
I'm happy that 23andMe is using my data for drug research. I don't want companies to read my private messages, but drug companies are trying to fix things in me, and ask for a lot of money in return, which is more fair than what many other companies are doing.
- vagab0nd 8y ago
  Same here. I care about privacy. But in this case I'm willing to trade that for contribution to medical research. Am I being too optimistic?
  - FlyMoreRockets 8y ago
    I don't think it's possible to be too optimistic. Naivety could be an issue though.
cinquemb 8y ago
The writing was on the wall for a long time... Best that people can do in the future will be to make the tools as cheap and accessible as possible so we wont have major genetic data monopolies acting as a walled garden that they can reap the benifts from the most... though they’ll be the head honchos in town for awhile until then.
skizm 8y ago
I can't believe 23andMe isn't free yet. Or more accurately, that a competitor hasn't come in and offered a free version which would force 23andMe to make their product free. The fact that they can get away with _charging you_ to collect and sell your genetic information is nuts. Same goes for Amazon's Alexa.
- wand3r 8y ago
  Well this aspect of their business is 100% opt in apparently. Maybe a discounted pricing tier would make sense if you opt in but its not as if you are the product. I dont own or understand Alexa because I personally wouldnt use one so I cant comment
- gwern 8y ago
  This is almost the case, as far as just the raw SNP genotyping goes. Have you seen the rash of new startups like Nebula or Helix? They can be 'free' in some cases. Which makes sense as the genotyping cost has plummeted to like $20-50 in bulk. But you're underestimating that one of the big draws of 23andMe is their detailed ancestry analysis - which isn't going to be replicated overnight by a competitor - and their related social networking/genealogy aspects, which definitely isn't replicable overnight. I have zero interest in that but I still get contacted every couple of months on 23andMe by genealogy hobbyists looking for more information. (And they also have FDA-compliance on some of their health reports, which isn't easy either.)
rhegart 8y ago
Pass legislation regulating the usage of genetic data, meeting proper encryption standards, purposefully not allowing tracking an individual’s data and history to a person like companies are not allowed to track a specific person to their browsing history. Invoke hefty punishment for not following the laws. And I am completely in favor of this as an opt in. It could save so many lives and be safe as well.
geofft 8y ago
This article is from June 2018 - I've seen the news go around social media in the last day or so but I'm unsure what gave it newsworthiness again. Did people just freak out now that they've gone through the 23andMe kits they received for Christmas?
badwetter 8y ago
Is this story exclusive to BI? Registration is required to read it.

189 points by dwighttk 8y ago

Title requires reference to this article being from July 2018

Question from someone ignorant on the topic: if the US ever adopted a universal health care system in the future, would disclosures of 23andMe/Ancestry DNA to insurance companies still have negative effect? I’m assuming that under a universal system, it wouldn’t matter how severe your conditions are, as you’d be covered anyway.

georgyo 8y ago
A hypothetical health care system could be designed in all sorts of ways. While your gut feeling is likely correct, they could implement a system has reduced benefits for people deemed to costly to support. Or prioritize treatment of critical problems and not count preexisting conditions as critical. It is much more likely that everyone would be covered in the same exact way in my opinion though.
MereInterest 8y ago
At that point, from a medical perspective, I don't believe so. The other main issue would be privacy, which would not at all be affected. Under the third-party doctrine, there is no expectation of privacy when individuals share information with a third party. Therefore, that information can be demanded by police without a warrant. Having the information collected into a central location (the insurance companies) would make it easier for a large number of these requests to be filed, rather than needing to track down individual services for each investigation.
jahaja 8y ago
There's a lot of other non-health related insurances and more that depends on an assumed average lifespan. Mortgage/Loans, employment etc. One could become an second class citizen in such a dystopian future.
- stochastic_monk 8y ago
  I recently watched the film GATTACA. I was shocked by how appropriate it was for our time. In the film, discrimination by genetics is, strictly speaking, against the law, but a matter of course because of how easy it is to get a sample and sequence someone. Humans are judged based on what's in their genes, not who they are. The synthetic, designed humans are classified as "valid", while those born naturally are "invalids" or "de-gene-erates". It would be quite easy for people of all walks of life to become second-class citizens due to information in their genomes if things do not change quickly.
Someone1234 8y ago
23AndMe/Ancestry don't reveal DNA information to insurance companies. Even if you opt into providing your DNA for research purposes, it is anonymized.
- swixmix 8y ago
  How can my DNA be anonymized? It's a unique identifier to me and leaks traceable information about my family.
  - Someone1234 8y ago
    Because it impractical to tie the information found in the DNA back to you as an individual (e.g. name, social security number, etc). It is therefore impractical for companies to use that information to target you.
    - sorokod 8y ago
      Even if it is impractical now, is there any objective reason to believe it will remain so in the future?
      - Someone1234 8y ago
        The sequenced DNA exists without any identifying information linking it to an individual. If they re-sequenced you and matched the two, they've gained nothing (since they had to re-sequence anyway), if they didn't re-sequence then they have no way of associating the two. So now, tomorrow, or into the far future the two piece of information cannot be re-associated because there's nothing to map them. The information about the link is lost. It is like asking "Can a lossy MP3 be restored to the lossless version if technology improves enough?" Nope. The information is simply gone. Same is true here, the associated link is just gone.
        Real_S 8y ago
        This is a common misconception, but you are incorrect. These data can be used to identify you, therefore they are not anonymous. If a name is removed from a file that contains zip-code, age and gender, that data is nevertheless sufficient to re-identify most people. Removing a name from a data-base does not necessarily anonymize that data-base. DNA can be used to uncover your last name and ethnicity, estimate your height, hair color, eye color and more, so anonymization is not as simple as removing a name.

Someone1234 8y ago

This article is highly disingenuous. 23andMe ask you during sign up if you wish to take part of anonymized research. They ask you again for each person whose sample you submit. You can also opt out at any time. The article author even knows this, since when they asked Ancestry (23AndMe's owner) that was exactly what they were told. So why does the article have such a hyperbolic tone and misleading information? I don't have high expectations for Business Insider but this article still disappoints me. This is tabloid level "journalism."

eekfuh 8y ago
AFAIK 23andme and Ancestry are competitors. This would makes sense why they asked Ancestry what they do and doesn’t use that to make the argument as each company may treat sharing differently.
- ryanmercer 8y ago
  >AFAIK 23andme and Ancestry are competitors I'm not sure I'd call them competitors. Yes they both take your spit and process it, yes they both allow you to see potential extended family but that's about the only similarities. Ancestry added it as an extension of their genealogical services while 23andme was originally for personal medical discovery before the FDA came down on them and they had to change tactics.
dekhn 8y ago
writing articles that blame pharma and biotech for stealing people private data is the hot thing now. It increases page hits. Same with blaming google, facebook for stealing user data; it's the fear du jour. While there are legitimate concerns, 23&Me is pretty good in terms of privacy practices and their founders/employees are working in good faith to improve the health of humans. It's kind of sad that gets twisted into "compabnies are profiting from your personal data", because while that is true, it's not nearly as invasive or gattaca as people seem to think.
- dhimes 8y ago
  In this case, nobody's stealing anything. People are opting to give them not only their information, but those of their descendants as well. Apparently they think that some sort of "privacy clause" (written by the corporation's lawyers no doubt) will remain intact if things get financially tight, and that the courts and governments will step in if the businesses try to take advantage of their knowledge in a way detrimental to the customer. But we all understand that technology is only going to make more information available from those samples over time. The board has a fiduciary responsibility to its shareholders, and it doesn't take a great imagination to see that if the information becomes valuable in new ways then there will be pressure to use it however they can. What we have here is a baby step.

tossaccount123 8y ago

Imagine giving your DNA to the (former)wife of a Google cofounder? Why are people surprised they would abuse your data for profit?

SmellyGeekBoy 8y ago
Because all of the available information indicates that this is very much not the case?

tw1010 8y ago

Makes me glad I didn't use 23andMe and makes me not ever want to use products like that in the future.

jonlucc 8y ago
Can I ask why? Is it because that company is profiting off of your data or something else?
- sschueller 8y ago
  Eventually this data will get into the hands of governments and others. Who is to say that in the future you are not permitted to own a firearm (just an example ) because you have some gene that may increase your tendancy for violence (some future research show)? What about an insurance denying you becuase of a gene? That may be illegal but it's you against Goliath. How many laws are broken by banks etc. without recourse because the ones affected don't have the resources to fight it? Sure these are extremes but if this information is available, eventually it will be used and most likely first for for profit.
  - geggam 8y ago
    * side note * Government is 1 of the largest buyers of marketing data as well. They cant do the spying legally but nothing stops them from purchasing what corporations do.
  - malvosenior 8y ago
    If you were born in California after 1983, the government already has this data: https://sanfrancisco.cbslocal.com/2018/05/08/california-biobank-stores-baby-dna-access/ https://sanfrancisco.cbslocal.com/2018/05/08/california-biob...
- windexh8er 8y ago
  I think there are some simple situations that provoke this type of response. The first is that while there are protections in place they are only paper protections. History has shown us those are not always effective. What if 23andme goes bankrupt and the data is "lost" or just sold to the lowest bidder? I am not certain of the legal loopholes present, but I wouldn't doubt we'll see a case of this happening in the next decade. The second is long term exposure to the unknown. Even if you knowingly choose to opt-in, what if that data is used against said persons at some point in the future for something they failed to consider, maybe because they couldn't know because it's not been identified as of yet? Profit isn't always the detractor. I get that these organizations need to make money. But without proper explanation (there should be a better legal framework in place for services like this that offer equal protections to both sides) and a potentially biased legal agreement, informed users will likely question the unknown of giving up information to a company who will continually be realizing ways to use your DNA for the foreseeable future. And, oh by the way, you paid them to do that. $0.02

jonlucc 8y ago

I'm not exactly an expert in this field, but I work in big pharma, and I've seen the presentation 23andMe gives to drug companies. Basically, there are two ways GSK can use your data stored at 23andMe, and both require explicit opt-in. First is that they can basically just give access to huge databases. You might be surprised at how inefficient this will probably be for target hunting. There are already lots of GWAS studies that don't result in a single viable drug target. The other way, and where I suspect the bulk of the $300M/4yrs is going, is in recruiting patients for clinical trials. GSK can tell 23andMe that they need 150 patients living near metropolitan centers who have indicated they suffer from X disease, and don't have Y mutation. This could drastically reduce the cost of recruiting for Phase 2 trials (though it may skew the patient populations in ways we haven't really had to deal with before). <edit> If I remember correctly, 23andMe contacts these potential patients to ask if they're interested in the GSK trial, then refers them to contact the GSK clinical trial site. They don't just give your phone number to GSK </edit> I guess I'm not really sure what the panic is about. First, every step is opt-in. Second, the data provided en masse is blinded to patient identity and industry standard is to disincentivize unblinding the data. Am I too close to and brainwashed by the industry to see what's wrong here?

Real_S 8y ago
Recruiting people for drug trials seems unlikely to be a goal, but I could be surprised. I suspect they are planning to use sequence data to find drug targets. Sequence data has more potential than GWAS ever had, e.g. finding rare mutations. "Blinded to patient identity" is true, but it can be relatively easy to re-identify these individuals using this data. So this data has your identity intertwined with potentially very private information. Some people intuitively desire to be as cautious as possible with their genetic information, and there is good reason for caution. Worst case it somehow ends up on the black market. You can't change your DNA, so if it gets out, there is no turning back.
- iso1337 8y ago
  23andme uses genotypimg and not sequencing, so you won’t be getting those rare mutations. That’s how they can keep the price so low. I think your point still stands though, your genotype is still identifying information and should be safeguarded. https://customercare.23andme.com/hc/en-us/articles/202904600-What-is-the-difference-between-genotyping-and-sequencing- https://customercare.23andme.com/hc/en-us/articles/202904600...

perlgeek 8y ago

If you are an EU citizen, GDPR applies, which means you can request deletion of your personal data at any time (unless there is an obligation by law to keep that data, for example invoices). I just don't know how well it can be enforced with businesses that don't have an office in EU land.

pyrophane 8y ago

BTW, you can have 23andMe delete your data, including the genetic data they have stored. I did this a couple of years back and it was fairly straightforward. Sounds like it is even more so now: https://customercare.23andme.com/hc/en-us/articles/212170688-Requesting-account-closure https://customercare.23andme.com/hc/en-us/articles/212170688... Also, at the time you could download an export of your genetic data and that is probably still the case.

wslh 8y ago
Do you know if it's relatively easy to analyze your genetic information yourself instead of relying on a third party?
- Someone1234 8y ago
  No, since an analysis is itself a value judgement. What I mean is that a DNA profile is becoming even more useful every day due to additional research telling us what different parts of the genome is doing and what interactions it has (with drugs, food, environment, other parts of the genome). So you can read the raw DNA sequence yourself but it is the link into thousands of pieces of academic research that is the real value delivered here. Without that it is just a bunch of letters that mean nothing.
- afpx 8y ago
  Sure. There are lots of SNP databases out there. The NIH has a great repository, for instance. There’s even a wiki of most known SNPs, with descriptions. It’s kind of labor intensive without automation. But, I’m sure someone has written a script to compare raw SNP data to SNP databases. Things to keep in mind: 1) raw SNP data contains errors. 2) A particular SNP may be associated with condition X, but many other SNPs could be also be associated with X. And, rarely is it understood how they work together (since they’re often located in different genes). 3) a lot of SNP research is done using small samples, i.e. not much confidence. (A GWAS will produce more confidence, but also identify fewer SNPs of interest.)
- pyrophane 8y ago
  I used Promethease: https://promethease.com/ https://promethease.com/. It basically takes your genetic information and maps it to what is in SNPedia: https://snpedia.com/ https://snpedia.com/. The problem with this approach is that what you are getting isn't really analysis, and you will get lots of conflicting data and information that is not possible to interpret without specialized knowledge. Still, it can be both fun and interesting.

Tycho 8y ago

How much of a population’s DNA needs to be mapped before you can reliably triangulate the the identity of any individual by comparing to known DNA profiles? For instance if I have two cousins on different sides in the database, can they look at my DNA and narrow down the possible matches to me and my siblings of the same sex? What about more distant relations? (I’m thinking about how police caught that serial killer recently because some of his relatives had used one of these sites)

ssnistfajen 8y ago
It has sort of happened already: https://www.scientificamerican.com/article/how-to-identify-almost-anyone-in-a-consumer-gene-database/ https://www.scientificamerican.com/article/how-to-identify-a...
Real_S 8y ago
This depends entirely on the population. Rare individuals with unique DNA markers are easier to re-ID than individuals with more common DNA markers. But also consider that ethnicity is relatively easy to get from genetic data. So individuals with unique ethnic combinations can be trivial to identify by their genetic data. Now consider that genetic data can also be used to predict traits such as height, hair color, eye color, etc [0]. Reliable triangulation is already possible, and becomes increasingly more accurate as more data becomes available. 0: E.g.this company- https://snapshot.parabon-nanolabs.com/ https://snapshot.parabon-nanolabs.com/
gwern 8y ago
Very roughly, ~2%: https://www.biorxiv.org/content/early/2018/06/19/350231 https://www.biorxiv.org/content/early/2018/06/19/350231
dangrossman 8y ago
That's how a local cold murder case was solved. DNA from a 25-year-old crime scene was run against a genealogy database, and found a familial match. Police set up a sting to obtain DNA from that person's relatives. They found a DNA match with the brother's water bottle taken from the trash. The brother had never submitted a DNA sample to any databases himself. https://lancasteronline.com/news/local/christy-mirack-s-slaying-solved-with-arrest-of-lancaster-county/article_f05a2ee4-78b2-11e8-ad10-4382ef42f96d.html https://lancasteronline.com/news/local/christy-mirack-s-slay... The alleged killer was the DJ at my wedding. The trial's in May.

shadowtree 8y ago

If this triggers you, you kind of missed the fact that Roche was an investor in 23andMe hears ago. Plus 23andMe is located in the Genentech/Roche campus. Which is the funny bit given GSKs takeover.

dahinds 8y ago
23andMe headquarters is located in downtown Mountain View, and we have a lab in South San Francisco. Nothing on the Genentech campus.

xiphias2 8y ago

I'm happy that 23andMe is using my data for drug research. I don't want companies to read my private messages, but drug companies are trying to fix things in me, and ask for a lot of money in return, which is more fair than what many other companies are doing.

vagab0nd 8y ago
Same here. I care about privacy. But in this case I'm willing to trade that for contribution to medical research. Am I being too optimistic?
- FlyMoreRockets 8y ago
  I don't think it's possible to be too optimistic. Naivety could be an issue though.

cinquemb 8y ago

The writing was on the wall for a long time... Best that people can do in the future will be to make the tools as cheap and accessible as possible so we wont have major genetic data monopolies acting as a walled garden that they can reap the benifts from the most... though they’ll be the head honchos in town for awhile until then.

skizm 8y ago

I can't believe 23andMe isn't free yet. Or more accurately, that a competitor hasn't come in and offered a free version which would force 23andMe to make their product free. The fact that they can get away with _charging you_ to collect and sell your genetic information is nuts. Same goes for Amazon's Alexa.

wand3r 8y ago
Well this aspect of their business is 100% opt in apparently. Maybe a discounted pricing tier would make sense if you opt in but its not as if you are the product. I dont own or understand Alexa because I personally wouldnt use one so I cant comment
gwern 8y ago
This is almost the case, as far as just the raw SNP genotyping goes. Have you seen the rash of new startups like Nebula or Helix? They can be 'free' in some cases. Which makes sense as the genotyping cost has plummeted to like $20-50 in bulk. But you're underestimating that one of the big draws of 23andMe is their detailed ancestry analysis - which isn't going to be replicated overnight by a competitor - and their related social networking/genealogy aspects, which definitely isn't replicable overnight. I have zero interest in that but I still get contacted every couple of months on 23andMe by genealogy hobbyists looking for more information. (And they also have FDA-compliance on some of their health reports, which isn't easy either.)

rhegart 8y ago

Pass legislation regulating the usage of genetic data, meeting proper encryption standards, purposefully not allowing tracking an individual’s data and history to a person like companies are not allowed to track a specific person to their browsing history. Invoke hefty punishment for not following the laws. And I am completely in favor of this as an opt in. It could save so many lives and be safe as well.

geofft 8y ago

This article is from June 2018 - I've seen the news go around social media in the last day or so but I'm unsure what gave it newsworthiness again. Did people just freak out now that they've gone through the 23andMe kits they received for Christmas?

badwetter 8y ago

Is this story exclusive to BI? Registration is required to read it.