13 ms·

Are they still saying that by submitting a sample to them, that they then own your genome and can sell it to whoever they want? I'd love to get mine sequenced a

by Balgair 10y ago

Are they still saying that by submitting a sample to them, that they then own your genome and can sell it to whoever they want? I'd love to get mine sequenced and check it out a bit, but not if they are going to sell it off to a million shady companies whenever they go bankrupt (maybe 50+ years, but still)

deleted 10y ago
[deleted]
snowpanda 10y ago
Haven't read it fully, but i think it would be on this page: https://www.23andme.com/about/privacy/ https://www.23andme.com/about/privacy/
fourstar 10y ago
I ended up canceling my account because of this reason. That and the fact that a bunch of random people started trying to hit me up because apparently we were "linked".
- Balgair 10y ago
  Yeah, that's pretty creepy. Thank you very much for the anecdote and information.
- unethical_ban 10y ago
  You can turn off the discoverability.
caio1982 10y ago
"We will not sell, lease, or rent your individual-level information (i.e., information about a single individual's genotypes, diseases or other traits/characteristics) to any third-party or to a third-party for research purposes without your explicit consent." And... "Unless you choose to store your sample with 23andMe (called consent to "bio-banking", which can be found here and changed in your settings), your saliva samples and DNA are destroyed after the laboratory completes its work, unless the laboratory's legal and regulatory requirements require it to maintain physical samples." Also: https://www.23andme.com/en-int/legal/biobanking/ https://www.23andme.com/en-int/legal/biobanking/
- Analemma_ 10y ago
  Those statements don't seem to say anything about the possibility of your data being acquired by God-knows-who in the event 23andme goes bankrupt.
  - JumpCrisscross 10y ago
    After the Cloudera incident, I asked them to destroy my genetic sample and data. 23andMe's certification seemed clear that my data were no longer accessible by anyone.
    - chaostheory 10y ago
      > unless the laboratory's legal and regulatory requirements require it to maintain physical samples. I could be wrong but in a lot of cases in the US, labs are required to hold data for at least 2 years
    - liuhenry 10y ago
      What was the Cloudera incident? I couldn't find anything from Googling around.
- alexbecker 10y ago
  The "individual-level information" limitation is a huge weasel. 23andMe can and does share "anonymized" aggregations of its clients' genetic information [0]. Anonymization is not a property of a dataset though; it's a property of a dataset and the state of the world, and even if (and this is a big if) the dataset is truly anonymized right now, it won't always be. [0] "23andMe says that it is also able to share anonymous and pooled data about their self-reported health traits without asking." - https://www.forbes.com/sites/matthewherper/2015/01/06/surprise-with-60-million-genentech-deal-23andme-has-a-business-plan/#46f3886e2be9 https://www.forbes.com/sites/matthewherper/2015/01/06/surpri...
  - marchenko 10y ago
    Well said. Genetic data is by nature personally identifiable, and genomic disaggregation techniques can be expected to improve. Data troves like 23 and Me are an attractive target for DNA dragnets - at present, their SNP data is not CODIS-compatible (although it is theoretically possible that the SNAP data could be queried against a physical sample assayed for the same SNPs), but the physical samples are very valuable and customers should inspect their sample retention terms very closely.
arthurjj 10y ago
I actually did some market research on creating a service to use 23andMe anonymously because of this worry (I'd call it 32andYou). Essentially the user could pay the service, and then the service would pay 23andMe. At higher paying plans you could pay for the swabs to be sent to a 32andYou shipping address so that 23andMe doesn't even have your mailing address.
- dikdik 10y ago
  A friend of mine did this when he used the service. Used the office of an acquaintance as his address, a fake name, and paid with a pre-paid Visa card that he bought in cash.
  - Balgair 10y ago
    Is there a blog post or other written thingy that your friend has made to do this? I would love to know the step-by-step so I could repeat it.
    - dikdik 10y ago
      No, he just took every precaution he could to prevent his identity from being linked with the sample he sent.
  - jacquesm 10y ago
    And then he rounded this off by sending them a bunch of his DNA in a bottle.
- chrsstrm 10y ago
  Preventing 23andMe from directly linking a subject's genome to a name, cc, and mailing address would be nice, but what prevents them from comparing the test results to other subjects who have submitted samples? If my genetic relatives have also been tested by 23andMe then filling in the relationship graph doesn't seem too difficult, especially if given access to other social graphs. Does 23andMe offer certified isolated analysis?
gleb 10y ago
Yes, that's exactly what they are saying. That's how they make money. And if that concerns realize that your doctor sells your EMR data, your pharmacy sells your prescription data, the labs sell your blood work data too. https://genos.co/ https://genos.co/ will do a 75x whole exome sequencing (very good quality even for a clinical test) for $500 with a good customer experience and they don't sell your data. You can then feed the data to https://www.promethease.com/ https://www.promethease.com/ for interpretation.
- kregasaurusrex 10y ago
  Is there a list of genetic services and what data they provide somewhere, maybe a comparison of sorts? My father recently passed away of arryhtmia and I'm looking for a way to determine if said condition is hereditary or not.
  - gleb 10y ago
    Look on Promethease wiki and Reddit.
  - marchenko 10y ago
    If you have concerns about a specific trait in your family history, I would suggest speaking to a genetic counselor. Many genetic conditions are influenced by a suite of relatively rare mutations not commonly included in commercial kits. A geneticist can tell you if this condition localizes to a specific chromosomal region or set of regions and sequence those target regions in depth for a better estimate of your risk profile. Perhaps more importantly, they can tell you if it is worthwhile to do so. Some conditions are too complex to reduce to effective testing, or result from poorly-characterized private mutations, but may have associated non-genetic biomarkers that your physician can monitor if you bring the problem to his attention. If your father's condition was well characterized and you have access to his history, you can do preliminary research on SNPedia (SNPedia lists whether a SNP of interest is included in the 23andMe kit), or do a PubMed search on "genetic risk factors" /"targeted next-generation sequencing" $condition to get a sense of the state of the art.
- tonyhb 10y ago

by Balgair 10y ago

deleted 10y ago

[deleted]

snowpanda 10y ago

Haven't read it fully, but i think it would be on this page: https://www.23andme.com/about/privacy/ https://www.23andme.com/about/privacy/

fourstar 10y ago

I ended up canceling my account because of this reason. That and the fact that a bunch of random people started trying to hit me up because apparently we were "linked".

Balgair 10y ago
Yeah, that's pretty creepy. Thank you very much for the anecdote and information.
unethical_ban 10y ago
You can turn off the discoverability.

caio1982 10y ago

"We will not sell, lease, or rent your individual-level information (i.e., information about a single individual's genotypes, diseases or other traits/characteristics) to any third-party or to a third-party for research purposes without your explicit consent." And... "Unless you choose to store your sample with 23andMe (called consent to "bio-banking", which can be found here and changed in your settings), your saliva samples and DNA are destroyed after the laboratory completes its work, unless the laboratory's legal and regulatory requirements require it to maintain physical samples." Also: https://www.23andme.com/en-int/legal/biobanking/ https://www.23andme.com/en-int/legal/biobanking/

Analemma_ 10y ago
Those statements don't seem to say anything about the possibility of your data being acquired by God-knows-who in the event 23andme goes bankrupt.
- JumpCrisscross 10y ago
  After the Cloudera incident, I asked them to destroy my genetic sample and data. 23andMe's certification seemed clear that my data were no longer accessible by anyone.
  - chaostheory 10y ago
    > unless the laboratory's legal and regulatory requirements require it to maintain physical samples. I could be wrong but in a lot of cases in the US, labs are required to hold data for at least 2 years
  - liuhenry 10y ago
    What was the Cloudera incident? I couldn't find anything from Googling around.
alexbecker 10y ago
The "individual-level information" limitation is a huge weasel. 23andMe can and does share "anonymized" aggregations of its clients' genetic information [0]. Anonymization is not a property of a dataset though; it's a property of a dataset and the state of the world, and even if (and this is a big if) the dataset is truly anonymized right now, it won't always be. [0] "23andMe says that it is also able to share anonymous and pooled data about their self-reported health traits without asking." - https://www.forbes.com/sites/matthewherper/2015/01/06/surprise-with-60-million-genentech-deal-23andme-has-a-business-plan/#46f3886e2be9 https://www.forbes.com/sites/matthewherper/2015/01/06/surpri...
- marchenko 10y ago
  Well said. Genetic data is by nature personally identifiable, and genomic disaggregation techniques can be expected to improve. Data troves like 23 and Me are an attractive target for DNA dragnets - at present, their SNP data is not CODIS-compatible (although it is theoretically possible that the SNAP data could be queried against a physical sample assayed for the same SNPs), but the physical samples are very valuable and customers should inspect their sample retention terms very closely.

arthurjj 10y ago

I actually did some market research on creating a service to use 23andMe anonymously because of this worry (I'd call it 32andYou). Essentially the user could pay the service, and then the service would pay 23andMe. At higher paying plans you could pay for the swabs to be sent to a 32andYou shipping address so that 23andMe doesn't even have your mailing address.

dikdik 10y ago
A friend of mine did this when he used the service. Used the office of an acquaintance as his address, a fake name, and paid with a pre-paid Visa card that he bought in cash.
- Balgair 10y ago
  Is there a blog post or other written thingy that your friend has made to do this? I would love to know the step-by-step so I could repeat it.
  - dikdik 10y ago
    No, he just took every precaution he could to prevent his identity from being linked with the sample he sent.
- jacquesm 10y ago
  And then he rounded this off by sending them a bunch of his DNA in a bottle.
chrsstrm 10y ago
Preventing 23andMe from directly linking a subject's genome to a name, cc, and mailing address would be nice, but what prevents them from comparing the test results to other subjects who have submitted samples? If my genetic relatives have also been tested by 23andMe then filling in the relationship graph doesn't seem too difficult, especially if given access to other social graphs. Does 23andMe offer certified isolated analysis?

gleb 10y ago

Yes, that's exactly what they are saying. That's how they make money. And if that concerns realize that your doctor sells your EMR data, your pharmacy sells your prescription data, the labs sell your blood work data too. https://genos.co/ https://genos.co/ will do a 75x whole exome sequencing (very good quality even for a clinical test) for $500 with a good customer experience and they don't sell your data. You can then feed the data to https://www.promethease.com/ https://www.promethease.com/ for interpretation.

kregasaurusrex 10y ago
Is there a list of genetic services and what data they provide somewhere, maybe a comparison of sorts? My father recently passed away of arryhtmia and I'm looking for a way to determine if said condition is hereditary or not.
- gleb 10y ago
  Look on Promethease wiki and Reddit.
- marchenko 10y ago
  If you have concerns about a specific trait in your family history, I would suggest speaking to a genetic counselor. Many genetic conditions are influenced by a suite of relatively rare mutations not commonly included in commercial kits. A geneticist can tell you if this condition localizes to a specific chromosomal region or set of regions and sequence those target regions in depth for a better estimate of your risk profile. Perhaps more importantly, they can tell you if it is worthwhile to do so. Some conditions are too complex to reduce to effective testing, or result from poorly-characterized private mutations, but may have associated non-genetic biomarkers that your physician can monitor if you bring the problem to his attention. If your father's condition was well characterized and you have access to his history, you can do preliminary research on SNPedia (SNPedia lists whether a SNP of interest is included in the 23andMe kit), or do a PubMed search on "genetic risk factors" /"targeted next-generation sequencing" $condition to get a sense of the state of the art.
tonyhb 10y ago