8 ms·

23andMe Pulls Off Massive Crowdsourced Depression Study

122 points by nkurz 10y ago

Mtinie 10y ago
I'm very conflicted about trying a service like the one that 23andMe offers. Part of me would love to see what comes back, the other (currently louder) part of my brain is worried about throwing away any ideas of future genetic privacy if I do. The worst part is, I'm not sure which is a more rational desire. Is my my privacy concern undue paranoia?
- charlieflowers 10y ago
  I reached the same conclusion. There is the risk that insurance companies will somehow use my own genome against me in the future. I want to learn everything my own genome can teach me, but have complete control over which parts of that knowledge I share.
  - thaumasiotes 10y ago
    > There is the risk that insurance companies will somehow use my own genome against me in the future. They do that now. That's the whole point of asking for your family medical history.
    - nommm-nommm 10y ago
      Doesn't the ACA and GINA prevent them from doing this anymore?
    - criddell 10y ago
      My memory may be failing me, but I think when I last applied for life insurance, they asked if I had my genome sequenced and the possible answers were yes, no, or I don't want to say. I don't believe they asked for any information beyond that. I could see the day where they offer a discount if you disclose your data just like car insurers offer a discount if you opt-in to tracking.
      - mrfusion 10y ago
        23andme wouldn't count as sequencing anyway right? They're just looking for certain snp's.
        criddell 10y ago
        My memory may be wrong. It was a decade ago so maybe it wasn't DNA testing. I'm thinking it might have been full body scans. They were popular for a while, but I really haven't heard much about them lately.
      - wccrawford 10y ago
        Last I checked, it was specifically illegal for them to get that information for insurance purposes.
        criddell 10y ago
        I suppose it would be okay for them to collect that information, as long as it wasn't used to set insurance rates or to deny coverage.
  - berberous 10y ago
    In the U.S, the federal law GINA prevents genetic discrimination by health insurance companies. It could theoretically be repealed one day, but I think that is extremely unlikely. There are, however, certain gaps in the law. For example, I believe life insurance is not currently covered.
    - nommm-nommm 10y ago
      >It could theoretically be repealed one day, but I think that is extremely unlikely. For reference on how unlikely - https://www.congress.gov/bill/110th-congress/house-bill/493/actions https://www.congress.gov/bill/110th-congress/house-bill/493/... 04/25/2007 Passed/agreed to in House: On motion to suspend the rules and pass the bill, as amended Agreed to by the Yeas and Nays: (2/3 required): 420 - 3 (Roll no. 261).(text: CR H4083-4094) 04/24/2008 Passed/agreed to in Senate: Passed Senate with an amendment by Yea-Nay Vote. 95 - 0. Record Vote Number: 113. 05/01/2008 Resolving differences -- House actions: On motion that the House agree to the Senate amendment Agreed to by the Yeas and Nays: 414 - 1 (Roll no. 234).(text as House agreed to Senate amendment: CR H2961-2972) 05/19/2008 Presented to President. 05/21/2008 Signed by President. [The one Nay in the House was Ron Paul].
- jasode 10y ago
  It's true that 23amdMe doesn't want submissions to be anonymous[1]. However, that doesn't stop people from hacking their way around it.[2][3] [1]https://customercare.23andme.com/hc/en-us/articles/202907890-Can-I-be-genotyped-anonymously- https://customercare.23andme.com/hc/en-us/articles/202907890... [2]http://venturebeat.com/2013/09/20/how-to-use-23andme-without-giving-up-your-genetic-privacy/ http://venturebeat.com/2013/09/20/how-to-use-23andme-without... [3]https://news.ycombinator.com/item?id=2431433 https://news.ycombinator.com/item?id=2431433
  - nommm-nommm 10y ago
    [2] is just an advertisement for a company called Abine who apparently makes tools called DoNotTrackMe and MaskMe. Using your work address for a shipping/billing address is not "hacking [your] way around" anything.
    - jasode 10y ago
      >is just an advertisement for a company called Abine It's true the writer works for Abine (and she discloses that fact) but it's not relevant. Your comment (unintentionally) makes it sound like Abine is selling an intermediary privacy mailbox for receiving 23andMe data and that's not the case. Copying her steps requires zero interaction with Abine. >Using your work address for a shipping/billing address is not "hacking [your] way around" anything. She was using a fake name in combination with a work address which can be an adequate hack for many people if they are not under active FBI surveillance. If the work address has a thousand employees, that might be anonymous "enough". That's probably better anonymity than combining a fake name with your relative's (parent's/sibling's) address. If one needs more anonymity than the fake name + work address, he/she would have to get way more creative. Possibly get on Silk Road 3.0 to buy a counterfeit government driver's license with an alias -- and use that ID to rent a USPS mailbox for $50. Also maybe get a wig and mustache to avoid face recognition from USPS cameras on the premises. Etc,
      - deleted 10y ago
        [deleted]
- maga 10y ago
  > Is my my privacy concern undue paranoia? And are there genes responsible for it? On a more serious note, I remember hearing about microchips the size of USB sticks that were supposed to sequence a DNA in hours costing "only" few grands back then couple of years ago. I'm surprised they didn't yet flood the market considering the privacy concerns when it comes to services like 23andMe. Sure, those services do more just sequencing, but for those who would just like to check for a few hereditary deseases running in their family while sticking to their tinfoil hat that would be a bargain. In my case, though, my body is so tough that I'm afraid if my DNA is revealed it may be used for making a clone army one day.
  - yread 10y ago
    Sequencing is the easy part. Going from an unordered set of 100-character reads (with 10% error rate) to a list of somatic variants (mutations, insertions and deletions that have a biological effect) is the difficult and costly part
    - maga 10y ago
      > Going from an unordered set of 100-character reads (with 10% error rate) to a list of somatic variants (mutations, insertions and deletions that have a biological effect) is the difficult and costly part Isn't it a software/data science problem? And if so, what makes if difficult? Computational complexity or the availability of reference data, or both?
      - dekhn 10y ago
        If you assume the hardware is fixed, then yes, it's a data problem. What makes it difficult is several things: the genome itself has many repetitive regions whose lengths are greater than 100 characters. If your sequencing technology produces reads less than 100 characters, you don't have enough information to place those reads within their proper location in the genome. Next: There are regions that aren't exact duplicates of each other, but are very similar. If you have a 100 character read, and you know it probably contains errors (a necessary consequence of the sequencing technology), it can be hard to assign it precisely to a single region, as the read will match numerous regions equally well. A huge amount of effort is currently put into mapping these reads to the most appropriate location. Next, because of the high cost of doing the assembly properly, heuristics are used. Often, the heuristics will be based on greedy algorithms, that try to tile overlapping reads to extend the reads into longer segments. However, due to the read error rate, you might accidentally tile two unrelated reads; this wil prevent you from finding the true, optimal solution. To correct for this ambiguity, you typically have to sample a large combinatorial set of possible solutions to find the best ranking one. This is a major area of research. Mapping reads to reference data is often done (instead of wholesale assembly) but it suffers from the same problems. The reference is highly biased, it was based on a small number of individuals; when you try to map reads from an individual who is genetically distinct from the reference nindividual, there will be large regions that don't map (for example, I believe the reference was a European-American, if you try to map African genomes to that reference, you'll find there are entire regions missing from one that are in the other. I don't know a lot of CS, but there is probably a term for taking a bunch of reads and mapping them in a way that maximizes the probability of the mapped reads representing the true solution (IE what is actually in the person's genome). Most people come up with heuristics that (IMHO) have serious deficiencies. When I ran Exacycle at Google we used it to do a "real" assembly (full n2 comparison of all read pairs) and we found it was far more accurate than previously assembled genomes. Subsequent to that, Gene Myers (who designed shotgun assemblers) used these reults to find a heuristic that produced assemblies that were nearly as good but at a much lower cost. I'm personally still skeptical. If sequencers produced 10KB reads with 0.01% error rate, I'd be happy.
- miguelrochefort 10y ago
  > Is my my privacy concern undue paranoia? Yes.
- ufukbay 10y ago
  I'm in the same boat like you. For example I would love to see where my ancestors come from but I also have privacy concerns. (I would be willing to pay more for an anonymous service.)
  - losteverything 10y ago
    I have concluded that I want to be a friend to my ancestors, not a voyeur. After long self debate I won't continue my love of genealogy with any of the 3 types of DNA tests- submissions. But at some point I think it will be irrelevant because 1,2,3 Generations will triangulate me anyway Fun reads on reddit genealogy
- naasking 10y ago
  > The worst part is, I'm not sure which is a more rational desire. Is my my privacy concern undue paranoia? Probably. Getting a DNA sample from you would be trivial if someone really wanted it. You throw off genetic material all the time. At worst, having it already archived on a service lowers the barrier slightly.
  - mattmanser 10y ago
    You're looking at it the wrong way round. You're not protecting yourself against being specifically targeted, you're protecting yourself against getting erroneously caught in a dragnet.
- marchenko 10y ago
  Your privacy concern is not necessarily undue paranoia. It can be difficult to adequately anonymize genetic data, which can be personally identifying by its very nature, without much accompanying metadata. And you should also keep in mind that you can partially compromise the privacy of your genetic relatives as well. 23 and me may have reasonable privacy protections for the current state -of-the-art, but advances in genomics mean that what is 'anonymized' today might be personally identifiable in the near future. And what happens if 23 and Me, or its assets, are sold in the future? Unlike email addresses, login details, or bank accounts, genetic data remain personally identifying for you and your relatives and descendants and are inalienable (at least until the BioSingularity) While it is true that anyone could collect your shed cells to analyze, collecting personal artefacts requires some degree of prior specific interest in you sufficient to justify the costs of the collection and analysis - this is a barrier. When your data is uploaded into an easily-searchable database, this barrier is lowered, allowing those with access to trawl the DB for any members matching certain criteria. You should also keep in mind that all of these private databases are open to subpoena by various governmental jurisdictions. If you are familiar with the Birthday Problem and the various common abuses of Bayesian reasoning, you can imagine how this could pose a problem even for law-abiding citizens (and their relatives, remember). Additionally, it should be noted that regulations against adverse use of publicly-stored genetic information (e.g. by insurance companies) are by no means universal. Aggregated SNP data is very useful for researchers. But the utility of these commercial SNP products for the customer - beyond satisfying personal curiosity - is often overstated. If you are in the fortunate position of having access to a reasonably adequate family medical history and regular physical examinations, you will receive little marginal medical benefit from these services. Many of the phenotypes that customers spend the most time discussing on various fora can be reconstructed with reasonable accuracy from a pedigree, and the predictive power of these assays for many polygenic traits is fairly low at present. If you are interested in a few particular traits (like caffeine or drug metabolism) I would suggest ordering a kit for just those traits at first, and also playing around with data available on the 1000 Genomes website (www.1000genomes.org). This can be a bit more expensive, but it allows you to establish your comfort level with DNA data before exposing you to any privacy concerns. Of course, if you are interested in conducting personal research on your own SNP chip data and are already familiar with the data format and all of the associated statistical caveats, 23 and Me provides a good product at a reasonable price.
- nkurz 10y ago
  Could you (and others) be more explicit about which privacy concerns you have? Rather than treating them as an amorphous whole, it's probably more accurate to consider each concern individually. I've used 23andMe, and think it's an acceptable low risk compared to the potential benefit. But maybe I'm missing something that's obvious to others.
  - nommm-nommm 10y ago
    What's the potential benefit?
    - nkurz 10y ago
      To me, the main benefit is potential knowledge about specific risks that I might be able to mitigate. But even if it just satisfies my own intellectual curiosity, I find it to be a benefit. To the world, I think that having a large dataset helps to improve the quality of studies such as the one being discussed. There's great utility in having a "hold-out set" for verification. The OP presumably perceives some similar benefits, hence the sense of being "conflicted". Whether the benefits are real is a valid, although separate question than whether the privacy concerns are justified.
shaqbert 10y ago
23andMe biz model in a nutshell: - you give us your DNA (spit) and consent to do whatever we goddamn like with your DNA - we give you some dozen of mostly uninteresting genetic marker worth of analysis (wet earwax anyone?) With genetic filtered pharma studies in the vicinity, 23andMe sits on a goldmine.
- jonlucc 10y ago
  As someone who works in pre-clinical pharma research, thank god someone is doing this. Projects get killed because they would lead to a drug that would require very expensive clinical trials. Often, this is because the patient population is hard to identify before they get very sick. Also, I think 23andMe should be very clear that this is what they do, but it isn't inherently problematic. People shouldn't ever be surprised by getting asked to be in a clinical trial based on their information stored at 23andMe.
lips 10y ago
This article has zero detail. It's like an empty box of cookies.
argonaut 10y ago
Most people in this thread are missing the fact that use of your genetic info for research purposes by 23andme is opt-in. And their privacy statements indicate the same would hold for other uses.
- batbomb 10y ago
  Just because something is opt-in, that doesn't mean it is necessarily ethical.
  - merpnderp 10y ago
    They clearly state, in short easy to read words, exactly what is going to be done with your data. They also offer at any time to destroy the remains of your existing sample and disassociate the data with your account. They may be unethical, but I have seen zero evidence of it.
    - posterboy 10y ago
      That implies the usage of the data is easy to understand exactly.
  - SEJeff 10y ago
    And by ethical do you mean you personally don't want your DNA used in this regard, or by ethical do you mean "helps those suffering ailments such as depression"? Having a friend who committed suicide and also being someone who voluntarily let 23andme use my DNA for this sort of thing, I'm very excited to see it happen. This type of research will literally save someone's life some day. Just wish it had been my friend :(
  - dekhn 10y ago
    That is strictly true, but 23andme's docs on what they do with your data is pretty good, and I don't see any ethical concerns with that they are doing (note: I've worked to make opt-in medical consent the default, I know a fair amount of what's going on in this area). By providing the necessary information for an individual to make an opt-in choice, the individual has the ability to decide the ethicality themselves.
erdevs 10y ago
I believe this is the underlying paper: http://www.nature.com/ng/journal/vaop/ncurrent/full/ng.3623.html http://www.nature.com/ng/journal/vaop/ncurrent/full/ng.3623.... GWA studies general should be treated with great caution. The way they work generally is based on a simple p-value test of association among outcome (in this case, depression) and all genes based on SNPs. There is a high degree of mere chance association and false positives. Most GWA studies leave a lot to be desired. This one looks more solid than most. The p-value appears to be 10^-5 and they ran a replication data set as well. Many GWASs report much less stringent p-value and many don't run sub-replications. One interesting aside about GWA studies: this may have changed recently, but I believe it used to be that any GWA study involving funding from the NIH was requires to post its data to a public, freely available database. That always seemed a good practice to me and one that should be emulated in other sorts of studies involving government funding. I wonder if this study is subject to that requirement.
- jessriedel 10y ago
  > There is a high degree of mere chance association and false positives. Are you really suggesting that most GWAS studies don't calculate genome-wide significance? This is wrong. If that's not what you're suggesting, I don't know what you're saying.
  - erdevs 10y ago
    You should try reading up on the subject before being blithely dismissive. False discovery rates, false positive rates, and family-wise error rates and how best to control for them are ongoing areas of interest and research in GWAS. There are calls for p-value requirements in the 10^-8 range to help avoid this. There are calls to address stratification (which can affect both type I and type II errors). A lot of research and debate on this topic over the past several years. Who are you exactly to dismiss all of this scientific inquiry? It's great if you have expertise in another field, but it seems odd to dismiss scientific questions and ongoing research in this particular field. You'll find plenty of information if you actually seek it out rather than simply making a knee-jerk, snarky comment, but here is one example article which articulates some of the issues that have been under consideration in recent years: http://m.ije.oxfordjournals.org/content/41/1/273.full http://m.ije.oxfordjournals.org/content/41/1/273.full Note, there, how the level of significance is discussed. A p-value of 10^-7 to 10^-8 is suggested (as compared to this study's 10^-5 level of significance... and, believe me, many GWA studies have been published with much less significant p-values). This is an ongoing and active area of discussion in the field. I'm not an expert, but some of my colleagues are, and it's a topic they sometimes discuss and brainstorm over lunch, etc. Actually, even the wikipedia page on GWAS mentions some of this inquiry and debate, as well as the erroneous publication that has plagued this nascent field. It'll all be worked out over time and great discussions are happening here. Vast improvement in processes and standards has been made over the past few years in particular. But we don't move the ball forward by dismissing questions or incorrectly assuming all must simply be right and well.
wahsd 10y ago
What do we do when gene studies reveal some inconvenient truths like that xyz people are more prone to violence and anti-social behaviors? Do we just suppress that information like a liberal authoritarian type regime that seems to be emerging? Do we just ignore it and by which rationale? Do we accept it and adjust our policing and policies to focus a level of resources on preventing xyz people from committing crimes that is proportional to their propensity to commit crimes?

122 points by nkurz 10y ago

I'm very conflicted about trying a service like the one that 23andMe offers. Part of me would love to see what comes back, the other (currently louder) part of my brain is worried about throwing away any ideas of future genetic privacy if I do. The worst part is, I'm not sure which is a more rational desire. Is my my privacy concern undue paranoia?

charlieflowers 10y ago
I reached the same conclusion. There is the risk that insurance companies will somehow use my own genome against me in the future. I want to learn everything my own genome can teach me, but have complete control over which parts of that knowledge I share.
- thaumasiotes 10y ago
  > There is the risk that insurance companies will somehow use my own genome against me in the future. They do that now. That's the whole point of asking for your family medical history.
  - nommm-nommm 10y ago
    Doesn't the ACA and GINA prevent them from doing this anymore?
  - criddell 10y ago
    My memory may be failing me, but I think when I last applied for life insurance, they asked if I had my genome sequenced and the possible answers were yes, no, or I don't want to say. I don't believe they asked for any information beyond that. I could see the day where they offer a discount if you disclose your data just like car insurers offer a discount if you opt-in to tracking.
    - mrfusion 10y ago
      23andme wouldn't count as sequencing anyway right? They're just looking for certain snp's.
      - criddell 10y ago
        My memory may be wrong. It was a decade ago so maybe it wasn't DNA testing. I'm thinking it might have been full body scans. They were popular for a while, but I really haven't heard much about them lately.
    - wccrawford 10y ago
      Last I checked, it was specifically illegal for them to get that information for insurance purposes.
      - criddell 10y ago
        I suppose it would be okay for them to collect that information, as long as it wasn't used to set insurance rates or to deny coverage.
- berberous 10y ago
  In the U.S, the federal law GINA prevents genetic discrimination by health insurance companies. It could theoretically be repealed one day, but I think that is extremely unlikely. There are, however, certain gaps in the law. For example, I believe life insurance is not currently covered.
  - nommm-nommm 10y ago
    >It could theoretically be repealed one day, but I think that is extremely unlikely. For reference on how unlikely - https://www.congress.gov/bill/110th-congress/house-bill/493/actions https://www.congress.gov/bill/110th-congress/house-bill/493/... 04/25/2007 Passed/agreed to in House: On motion to suspend the rules and pass the bill, as amended Agreed to by the Yeas and Nays: (2/3 required): 420 - 3 (Roll no. 261).(text: CR H4083-4094) 04/24/2008 Passed/agreed to in Senate: Passed Senate with an amendment by Yea-Nay Vote. 95 - 0. Record Vote Number: 113. 05/01/2008 Resolving differences -- House actions: On motion that the House agree to the Senate amendment Agreed to by the Yeas and Nays: 414 - 1 (Roll no. 234).(text as House agreed to Senate amendment: CR H2961-2972) 05/19/2008 Presented to President. 05/21/2008 Signed by President. [The one Nay in the House was Ron Paul].
jasode 10y ago
It's true that 23amdMe doesn't want submissions to be anonymous[1]. However, that doesn't stop people from hacking their way around it.[2][3] [1]https://customercare.23andme.com/hc/en-us/articles/202907890-Can-I-be-genotyped-anonymously- https://customercare.23andme.com/hc/en-us/articles/202907890... [2]http://venturebeat.com/2013/09/20/how-to-use-23andme-without-giving-up-your-genetic-privacy/ http://venturebeat.com/2013/09/20/how-to-use-23andme-without... [3]https://news.ycombinator.com/item?id=2431433 https://news.ycombinator.com/item?id=2431433
- nommm-nommm 10y ago
  [2] is just an advertisement for a company called Abine who apparently makes tools called DoNotTrackMe and MaskMe. Using your work address for a shipping/billing address is not "hacking [your] way around" anything.
  - jasode 10y ago
    >is just an advertisement for a company called Abine It's true the writer works for Abine (and she discloses that fact) but it's not relevant. Your comment (unintentionally) makes it sound like Abine is selling an intermediary privacy mailbox for receiving 23andMe data and that's not the case. Copying her steps requires zero interaction with Abine. >Using your work address for a shipping/billing address is not "hacking [your] way around" anything. She was using a fake name in combination with a work address which can be an adequate hack for many people if they are not under active FBI surveillance. If the work address has a thousand employees, that might be anonymous "enough". That's probably better anonymity than combining a fake name with your relative's (parent's/sibling's) address. If one needs more anonymity than the fake name + work address, he/she would have to get way more creative. Possibly get on Silk Road 3.0 to buy a counterfeit government driver's license with an alias -- and use that ID to rent a USPS mailbox for $50. Also maybe get a wig and mustache to avoid face recognition from USPS cameras on the premises. Etc,
    - deleted 10y ago
      [deleted]
maga 10y ago
> Is my my privacy concern undue paranoia? And are there genes responsible for it? On a more serious note, I remember hearing about microchips the size of USB sticks that were supposed to sequence a DNA in hours costing "only" few grands back then couple of years ago. I'm surprised they didn't yet flood the market considering the privacy concerns when it comes to services like 23andMe. Sure, those services do more just sequencing, but for those who would just like to check for a few hereditary deseases running in their family while sticking to their tinfoil hat that would be a bargain. In my case, though, my body is so tough that I'm afraid if my DNA is revealed it may be used for making a clone army one day.
- yread 10y ago
  Sequencing is the easy part. Going from an unordered set of 100-character reads (with 10% error rate) to a list of somatic variants (mutations, insertions and deletions that have a biological effect) is the difficult and costly part
  - maga 10y ago
    > Going from an unordered set of 100-character reads (with 10% error rate) to a list of somatic variants (mutations, insertions and deletions that have a biological effect) is the difficult and costly part Isn't it a software/data science problem? And if so, what makes if difficult? Computational complexity or the availability of reference data, or both?
    - dekhn 10y ago
      If you assume the hardware is fixed, then yes, it's a data problem. What makes it difficult is several things: the genome itself has many repetitive regions whose lengths are greater than 100 characters. If your sequencing technology produces reads less than 100 characters, you don't have enough information to place those reads within their proper location in the genome. Next: There are regions that aren't exact duplicates of each other, but are very similar. If you have a 100 character read, and you know it probably contains errors (a necessary consequence of the sequencing technology), it can be hard to assign it precisely to a single region, as the read will match numerous regions equally well. A huge amount of effort is currently put into mapping these reads to the most appropriate location. Next, because of the high cost of doing the assembly properly, heuristics are used. Often, the heuristics will be based on greedy algorithms, that try to tile overlapping reads to extend the reads into longer segments. However, due to the read error rate, you might accidentally tile two unrelated reads; this wil prevent you from finding the true, optimal solution. To correct for this ambiguity, you typically have to sample a large combinatorial set of possible solutions to find the best ranking one. This is a major area of research. Mapping reads to reference data is often done (instead of wholesale assembly) but it suffers from the same problems. The reference is highly biased, it was based on a small number of individuals; when you try to map reads from an individual who is genetically distinct from the reference nindividual, there will be large regions that don't map (for example, I believe the reference was a European-American, if you try to map African genomes to that reference, you'll find there are entire regions missing from one that are in the other. I don't know a lot of CS, but there is probably a term for taking a bunch of reads and mapping them in a way that maximizes the probability of the mapped reads representing the true solution (IE what is actually in the person's genome). Most people come up with heuristics that (IMHO) have serious deficiencies. When I ran Exacycle at Google we used it to do a "real" assembly (full n2 comparison of all read pairs) and we found it was far more accurate than previously assembled genomes. Subsequent to that, Gene Myers (who designed shotgun assemblers) used these reults to find a heuristic that produced assemblies that were nearly as good but at a much lower cost. I'm personally still skeptical. If sequencers produced 10KB reads with 0.01% error rate, I'd be happy.
miguelrochefort 10y ago
> Is my my privacy concern undue paranoia? Yes.
ufukbay 10y ago
I'm in the same boat like you. For example I would love to see where my ancestors come from but I also have privacy concerns. (I would be willing to pay more for an anonymous service.)
- losteverything 10y ago
  I have concluded that I want to be a friend to my ancestors, not a voyeur. After long self debate I won't continue my love of genealogy with any of the 3 types of DNA tests- submissions. But at some point I think it will be irrelevant because 1,2,3 Generations will triangulate me anyway Fun reads on reddit genealogy
naasking 10y ago
> The worst part is, I'm not sure which is a more rational desire. Is my my privacy concern undue paranoia? Probably. Getting a DNA sample from you would be trivial if someone really wanted it. You throw off genetic material all the time. At worst, having it already archived on a service lowers the barrier slightly.
- mattmanser 10y ago
  You're looking at it the wrong way round. You're not protecting yourself against being specifically targeted, you're protecting yourself against getting erroneously caught in a dragnet.
marchenko 10y ago
Your privacy concern is not necessarily undue paranoia. It can be difficult to adequately anonymize genetic data, which can be personally identifying by its very nature, without much accompanying metadata. And you should also keep in mind that you can partially compromise the privacy of your genetic relatives as well. 23 and me may have reasonable privacy protections for the current state -of-the-art, but advances in genomics mean that what is 'anonymized' today might be personally identifiable in the near future. And what happens if 23 and Me, or its assets, are sold in the future? Unlike email addresses, login details, or bank accounts, genetic data remain personally identifying for you and your relatives and descendants and are inalienable (at least until the BioSingularity) While it is true that anyone could collect your shed cells to analyze, collecting personal artefacts requires some degree of prior specific interest in you sufficient to justify the costs of the collection and analysis - this is a barrier. When your data is uploaded into an easily-searchable database, this barrier is lowered, allowing those with access to trawl the DB for any members matching certain criteria. You should also keep in mind that all of these private databases are open to subpoena by various governmental jurisdictions. If you are familiar with the Birthday Problem and the various common abuses of Bayesian reasoning, you can imagine how this could pose a problem even for law-abiding citizens (and their relatives, remember). Additionally, it should be noted that regulations against adverse use of publicly-stored genetic information (e.g. by insurance companies) are by no means universal. Aggregated SNP data is very useful for researchers. But the utility of these commercial SNP products for the customer - beyond satisfying personal curiosity - is often overstated. If you are in the fortunate position of having access to a reasonably adequate family medical history and regular physical examinations, you will receive little marginal medical benefit from these services. Many of the phenotypes that customers spend the most time discussing on various fora can be reconstructed with reasonable accuracy from a pedigree, and the predictive power of these assays for many polygenic traits is fairly low at present. If you are interested in a few particular traits (like caffeine or drug metabolism) I would suggest ordering a kit for just those traits at first, and also playing around with data available on the 1000 Genomes website (www.1000genomes.org). This can be a bit more expensive, but it allows you to establish your comfort level with DNA data before exposing you to any privacy concerns. Of course, if you are interested in conducting personal research on your own SNP chip data and are already familiar with the data format and all of the associated statistical caveats, 23 and Me provides a good product at a reasonable price.
nkurz 10y ago
Could you (and others) be more explicit about which privacy concerns you have? Rather than treating them as an amorphous whole, it's probably more accurate to consider each concern individually. I've used 23andMe, and think it's an acceptable low risk compared to the potential benefit. But maybe I'm missing something that's obvious to others.
- nommm-nommm 10y ago
  What's the potential benefit?
  - nkurz 10y ago
    To me, the main benefit is potential knowledge about specific risks that I might be able to mitigate. But even if it just satisfies my own intellectual curiosity, I find it to be a benefit. To the world, I think that having a large dataset helps to improve the quality of studies such as the one being discussed. There's great utility in having a "hold-out set" for verification. The OP presumably perceives some similar benefits, hence the sense of being "conflicted". Whether the benefits are real is a valid, although separate question than whether the privacy concerns are justified.

shaqbert 10y ago

23andMe biz model in a nutshell: - you give us your DNA (spit) and consent to do whatever we goddamn like with your DNA - we give you some dozen of mostly uninteresting genetic marker worth of analysis (wet earwax anyone?) With genetic filtered pharma studies in the vicinity, 23andMe sits on a goldmine.

jonlucc 10y ago
As someone who works in pre-clinical pharma research, thank god someone is doing this. Projects get killed because they would lead to a drug that would require very expensive clinical trials. Often, this is because the patient population is hard to identify before they get very sick. Also, I think 23andMe should be very clear that this is what they do, but it isn't inherently problematic. People shouldn't ever be surprised by getting asked to be in a clinical trial based on their information stored at 23andMe.

lips 10y ago

This article has zero detail. It's like an empty box of cookies.

argonaut 10y ago

Most people in this thread are missing the fact that use of your genetic info for research purposes by 23andme is opt-in. And their privacy statements indicate the same would hold for other uses.

batbomb 10y ago
Just because something is opt-in, that doesn't mean it is necessarily ethical.
- merpnderp 10y ago
  They clearly state, in short easy to read words, exactly what is going to be done with your data. They also offer at any time to destroy the remains of your existing sample and disassociate the data with your account. They may be unethical, but I have seen zero evidence of it.
  - posterboy 10y ago
    That implies the usage of the data is easy to understand exactly.
- SEJeff 10y ago
  And by ethical do you mean you personally don't want your DNA used in this regard, or by ethical do you mean "helps those suffering ailments such as depression"? Having a friend who committed suicide and also being someone who voluntarily let 23andme use my DNA for this sort of thing, I'm very excited to see it happen. This type of research will literally save someone's life some day. Just wish it had been my friend :(
- dekhn 10y ago
  That is strictly true, but 23andme's docs on what they do with your data is pretty good, and I don't see any ethical concerns with that they are doing (note: I've worked to make opt-in medical consent the default, I know a fair amount of what's going on in this area). By providing the necessary information for an individual to make an opt-in choice, the individual has the ability to decide the ethicality themselves.

erdevs 10y ago

I believe this is the underlying paper: http://www.nature.com/ng/journal/vaop/ncurrent/full/ng.3623.html http://www.nature.com/ng/journal/vaop/ncurrent/full/ng.3623.... GWA studies general should be treated with great caution. The way they work generally is based on a simple p-value test of association among outcome (in this case, depression) and all genes based on SNPs. There is a high degree of mere chance association and false positives. Most GWA studies leave a lot to be desired. This one looks more solid than most. The p-value appears to be 10^-5 and they ran a replication data set as well. Many GWASs report much less stringent p-value and many don't run sub-replications. One interesting aside about GWA studies: this may have changed recently, but I believe it used to be that any GWA study involving funding from the NIH was requires to post its data to a public, freely available database. That always seemed a good practice to me and one that should be emulated in other sorts of studies involving government funding. I wonder if this study is subject to that requirement.

jessriedel 10y ago
> There is a high degree of mere chance association and false positives. Are you really suggesting that most GWAS studies don't calculate genome-wide significance? This is wrong. If that's not what you're suggesting, I don't know what you're saying.
- erdevs 10y ago
  You should try reading up on the subject before being blithely dismissive. False discovery rates, false positive rates, and family-wise error rates and how best to control for them are ongoing areas of interest and research in GWAS. There are calls for p-value requirements in the 10^-8 range to help avoid this. There are calls to address stratification (which can affect both type I and type II errors). A lot of research and debate on this topic over the past several years. Who are you exactly to dismiss all of this scientific inquiry? It's great if you have expertise in another field, but it seems odd to dismiss scientific questions and ongoing research in this particular field. You'll find plenty of information if you actually seek it out rather than simply making a knee-jerk, snarky comment, but here is one example article which articulates some of the issues that have been under consideration in recent years: http://m.ije.oxfordjournals.org/content/41/1/273.full http://m.ije.oxfordjournals.org/content/41/1/273.full Note, there, how the level of significance is discussed. A p-value of 10^-7 to 10^-8 is suggested (as compared to this study's 10^-5 level of significance... and, believe me, many GWA studies have been published with much less significant p-values). This is an ongoing and active area of discussion in the field. I'm not an expert, but some of my colleagues are, and it's a topic they sometimes discuss and brainstorm over lunch, etc. Actually, even the wikipedia page on GWAS mentions some of this inquiry and debate, as well as the erroneous publication that has plagued this nascent field. It'll all be worked out over time and great discussions are happening here. Vast improvement in processes and standards has been made over the past few years in particular. But we don't move the ball forward by dismissing questions or incorrectly assuming all must simply be right and well.

wahsd 10y ago

What do we do when gene studies reveal some inconvenient truths like that xyz people are more prone to violence and anti-social behaviors? Do we just suppress that information like a liberal authoritarian type regime that seems to be emerging? Do we just ignore it and by which rationale? Do we accept it and adjust our policing and policies to focus a level of resources on preventing xyz people from committing crimes that is proportional to their propensity to commit crimes?