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I asked 23andMe if there was any way to delete my genetic data from their site after the Equifax hack news. From their response: "23andMe and our third party g

by dayvid 8y ago

I asked 23andMe if there was any way to delete my genetic data from their site after the Equifax hack news. From their response: "23andMe and our third party genotyping laboratory will retain Genetic Information, date of birth, and sex as required for compliance with applicable legal obligations, including the U.S. Federal Clinical Laboratory Improvement Amendments of 1988 (CLIA), California Business and Professional Code Section 1265, and College of American Pathologists (CAP) accreditation requirements. 23andMe will also retain limited information related to your account and data deletion request, including but not limited to, your email address, account deletion request identifier, and record of legal agreements for a limited period of time as required by contractual obligations, and/or as necessary for the establishment, exercise or defense of legal claims and for audit and compliance purposes. We recommend that you review our full Privacy Statement for more information about deleting your data before submitting your request." So basically, once your in their system, you can't get out. And you're paying them money for this. Any way to do self-DNA testing?

breck 8y ago
I believe there are services that will do whole genome seq for you for under $10k(and I assume won’t keep your data). You could then use Promethease for analysis. I’m unaware of any way you could do self-DNA testing at home unless you wanted to spend $100k+ on equipment, reagents, etc. The Nanopore might be relevant but I haven’t looked into it much.
- jklehm 8y ago
  $1000 for the Minion and 2 flow cells. $900 per flow cell after that[0]. For 30x coverage (standard) takes about 15 flow cells[1]. So looking at $12700 to DIY. [0] https://store.nanoporetech.com/flowcells.html https://store.nanoporetech.com/flowcells.html [1] https://nanoporetech.com/about-us/news/human-genome-minion https://nanoporetech.com/about-us/news/human-genome-minion
  - antpls 8y ago
    I asked myself the same question some weeks ago, and I did a bit of basic research. I didn't keep the sources, but I found there are 2 types of sequencing : "draft" and "full". From what I found, prices are quickly dropping over the past years, and the "draft" sequencing is becoming more complete. Most likely, 23andMe does a "draft" sequencing. Also I also read the value of $1000 for a draft sequencing. I wonder, given there are about 3 millions deaths each year in USA, why isn't there some kind of government sponsored research to collect death people's genomes? Every year, there would be 3 millions more genomes in database. People already dead don't need to have data protection or insurances risk, and there would be a full health historic and cause of death available for each genomes.
    - jghn 8y ago
      You’ll see 3 things in general: Genotyping: this is what 23andMe does. Here they’re looking at a few million locations on your genome to see what specific letter you have. These are the locations which are most typically different in humans Whole Exome Sequenckng (WES): full sequencing of your Exome. this is an oversimplification but the Exome has historically been viewed as where the “useful” DNA Whole Genome Sequencing (WGS): what the name implies. Can be quite useful in cancer and rare disease research, and were increasingly realizing how much of an oversimplification my explanation of WES is Almost all commercial “sequencing” that you see advertised is genotyping. And in the real sequencing world WES dominates WGS. In both cases it is due to cost. There are also a ton of options on all of these, such as how many SNPs are on the SNP chip in the genotyping case, or depth of coverage for WES/WGS
  - jghn 8y ago
    It’s also extremely easy to introduce human error into this process unless you’ve had a lot of practice.
- beaugunderson 8y ago
  Full Genomes Corporation[1] will do WGS at 30x for $1295, WGS at 20x for $900, and Long Read WGS (newer technology) for $2900. For Prime Day, Dante Labs[2] had a sale on a 30x WGS for $349; it's still on sale for $499. Once you have a WGS you might consider donating it to the Harvard Personal Genomes Project[3], Open Humans[4], or putting it on GitHub[5]. [1]: https://www.fullgenomes.com/whole-genome-sequencing/ https://www.fullgenomes.com/whole-genome-sequencing/ [2]: https://us.dantelabs.com/products/whole-genome-sequencing-wgs-full-dna-analysis https://us.dantelabs.com/products/whole-genome-sequencing-wg... [3]: https://pgp.med.harvard.edu/ https://pgp.med.harvard.edu/ [4]: https://www.openhumans.org/ https://www.openhumans.org/ [5]: https://github.com/beaugunderson/genome https://github.com/beaugunderson/genome
  - fapjacks 8y ago
    I've purchased a handful of Dante Labs 30x WGS kits on Amazon over the last couple of days. You didn't hear it from me, but the kits are still on sale on Amazon for $349... ... And an additional secret $100 discount during checkout. This is $250 WGS at 30x coverage. It should be front-page news.
    - tbrock 8y ago
      Can you provide a link or more info? I’m not seeing it. It seems to be at $499.
      - fapjacks 8y ago
        It looks like this listing ended about the same time that I posted about it, or at least in the time between my posting about it and six hours ago. Now there are only $499 kits by third-party sellers. But when there was still FBA inventory (fulfilled by Amazon), it was $349 plus the secret $100 "promotion" discount during checkout.
    - cncrnd 8y ago
      Are the results of WGS + analysis with promethease more insightful than the results of 23andMe?
- crb002 8y ago
  You could do it at Stanford or Iowa State for like $3k ? You would still have to prep the samples.
this_user 8y ago
You could use a EU-based competitor and then force them to delete the data through a GDPR request. Should work in theory, although I haven't tried it.
- bencollier49 8y ago
  You should be able to force a deletion through GDPR in any case, if you're European; 23andme have a European office as well.
  - andai 8y ago
    [serious] But wouldn't they get deleted after being sold to the highest bidder?
  - krageon 8y ago
    Using the EU office of a US corporation and assuming they will actually act in your best interest without them having been forced to in the past (and even then...) is very unwise, as multiple examples have already show us in the past. Please just use an EU lab (they exist, and they already removed your data before the GDPR if you asked) and accept that it's maybe a hundred euros more expensive. At least you can be a lot more certain you will not be invasively data mined later on.
- renaudg 8y ago
  No need to use a competitor : GDPR applies to all EU-based customers, regardless of where the service provider is.
Severian 8y ago
Other than your DOB and sex, can you just provide a fake name/email and go from there? Only people I want to share my genetic info with is my family, and they know how to contact me.
- strstr 8y ago
  Problem is that it’s easy to correlate dna data against each other and infer who you are (assuming some small number of relatives have also used the service). In fact, a find your relatives service is built in.
  - coryfklein 8y ago
    It still certainly seems like it would limit your exposure to practical consequences. If a health insurance company decides to use DNA databases when calculating premiums, it would certainly be more difficult to use your DNA data if your identity is merely inferred by genetic analysis rather than voluntarily self-implicating yourself.
    - a_136_chiffa 8y ago
      If they don't find your data, they will likely use your relative's data to infer the risk. I doubt your cousins, uncles and aunts would think twice before signing up with their real names to one of the "find where your ancestors came from for $69.99!" adverts. This industry should be heavily regulated and have engineered security layers making sure you always know where your data is, who has or had access to it and how it can be used.
- CamelCaseName 8y ago
  Even if you don't give out your peers information, they only need a few data points from your relatives (who may not even know they have given it their information) to figure out who you are.
DangerousPie 8y ago
This may be true, but I don't see how it applies to this story. You need to explicitly opt in for your data to be used for research. So if you have asked for your data to be deleted it would obviously not be used for this kind of work.
- a_136_chiffa 8y ago
  For now.
OkGoDoIt 8y ago
I just fudged most of my data when I signed up. Things like gender and race I put in correctly since I assume it could affect the results, but birthday slightly off, and any contact information completely off (throwaway email address, fake name, etc). No way in hell I trust any company in the US with my genetic data if it can be tied to me. Only reason I did the kit in the first place was at my girlfriend’s insistence.

by dayvid 8y ago

breck 8y ago

I believe there are services that will do whole genome seq for you for under $10k(and I assume won’t keep your data). You could then use Promethease for analysis. I’m unaware of any way you could do self-DNA testing at home unless you wanted to spend $100k+ on equipment, reagents, etc. The Nanopore might be relevant but I haven’t looked into it much.

jklehm 8y ago
$1000 for the Minion and 2 flow cells. $900 per flow cell after that[0]. For 30x coverage (standard) takes about 15 flow cells[1]. So looking at $12700 to DIY. [0] https://store.nanoporetech.com/flowcells.html https://store.nanoporetech.com/flowcells.html [1] https://nanoporetech.com/about-us/news/human-genome-minion https://nanoporetech.com/about-us/news/human-genome-minion
- antpls 8y ago
  I asked myself the same question some weeks ago, and I did a bit of basic research. I didn't keep the sources, but I found there are 2 types of sequencing : "draft" and "full". From what I found, prices are quickly dropping over the past years, and the "draft" sequencing is becoming more complete. Most likely, 23andMe does a "draft" sequencing. Also I also read the value of $1000 for a draft sequencing. I wonder, given there are about 3 millions deaths each year in USA, why isn't there some kind of government sponsored research to collect death people's genomes? Every year, there would be 3 millions more genomes in database. People already dead don't need to have data protection or insurances risk, and there would be a full health historic and cause of death available for each genomes.
  - jghn 8y ago
    You’ll see 3 things in general: Genotyping: this is what 23andMe does. Here they’re looking at a few million locations on your genome to see what specific letter you have. These are the locations which are most typically different in humans Whole Exome Sequenckng (WES): full sequencing of your Exome. this is an oversimplification but the Exome has historically been viewed as where the “useful” DNA Whole Genome Sequencing (WGS): what the name implies. Can be quite useful in cancer and rare disease research, and were increasingly realizing how much of an oversimplification my explanation of WES is Almost all commercial “sequencing” that you see advertised is genotyping. And in the real sequencing world WES dominates WGS. In both cases it is due to cost. There are also a ton of options on all of these, such as how many SNPs are on the SNP chip in the genotyping case, or depth of coverage for WES/WGS
- jghn 8y ago
  It’s also extremely easy to introduce human error into this process unless you’ve had a lot of practice.
beaugunderson 8y ago
Full Genomes Corporation[1] will do WGS at 30x for $1295, WGS at 20x for $900, and Long Read WGS (newer technology) for $2900. For Prime Day, Dante Labs[2] had a sale on a 30x WGS for $349; it's still on sale for $499. Once you have a WGS you might consider donating it to the Harvard Personal Genomes Project[3], Open Humans[4], or putting it on GitHub[5]. [1]: https://www.fullgenomes.com/whole-genome-sequencing/ https://www.fullgenomes.com/whole-genome-sequencing/ [2]: https://us.dantelabs.com/products/whole-genome-sequencing-wgs-full-dna-analysis https://us.dantelabs.com/products/whole-genome-sequencing-wg... [3]: https://pgp.med.harvard.edu/ https://pgp.med.harvard.edu/ [4]: https://www.openhumans.org/ https://www.openhumans.org/ [5]: https://github.com/beaugunderson/genome https://github.com/beaugunderson/genome
- fapjacks 8y ago
  I've purchased a handful of Dante Labs 30x WGS kits on Amazon over the last couple of days. You didn't hear it from me, but the kits are still on sale on Amazon for $349... ... And an additional secret $100 discount during checkout. This is $250 WGS at 30x coverage. It should be front-page news.
  - tbrock 8y ago
    Can you provide a link or more info? I’m not seeing it. It seems to be at $499.
    - fapjacks 8y ago
      It looks like this listing ended about the same time that I posted about it, or at least in the time between my posting about it and six hours ago. Now there are only $499 kits by third-party sellers. But when there was still FBA inventory (fulfilled by Amazon), it was $349 plus the secret $100 "promotion" discount during checkout.
  - cncrnd 8y ago
    Are the results of WGS + analysis with promethease more insightful than the results of 23andMe?
crb002 8y ago
You could do it at Stanford or Iowa State for like $3k ? You would still have to prep the samples.

this_user 8y ago

You could use a EU-based competitor and then force them to delete the data through a GDPR request. Should work in theory, although I haven't tried it.

bencollier49 8y ago
You should be able to force a deletion through GDPR in any case, if you're European; 23andme have a European office as well.
- andai 8y ago
  [serious] But wouldn't they get deleted after being sold to the highest bidder?
- krageon 8y ago
  Using the EU office of a US corporation and assuming they will actually act in your best interest without them having been forced to in the past (and even then...) is very unwise, as multiple examples have already show us in the past. Please just use an EU lab (they exist, and they already removed your data before the GDPR if you asked) and accept that it's maybe a hundred euros more expensive. At least you can be a lot more certain you will not be invasively data mined later on.
renaudg 8y ago
No need to use a competitor : GDPR applies to all EU-based customers, regardless of where the service provider is.

Severian 8y ago

Other than your DOB and sex, can you just provide a fake name/email and go from there? Only people I want to share my genetic info with is my family, and they know how to contact me.

strstr 8y ago
Problem is that it’s easy to correlate dna data against each other and infer who you are (assuming some small number of relatives have also used the service). In fact, a find your relatives service is built in.
- coryfklein 8y ago
  It still certainly seems like it would limit your exposure to practical consequences. If a health insurance company decides to use DNA databases when calculating premiums, it would certainly be more difficult to use your DNA data if your identity is merely inferred by genetic analysis rather than voluntarily self-implicating yourself.
  - a_136_chiffa 8y ago
    If they don't find your data, they will likely use your relative's data to infer the risk. I doubt your cousins, uncles and aunts would think twice before signing up with their real names to one of the "find where your ancestors came from for $69.99!" adverts. This industry should be heavily regulated and have engineered security layers making sure you always know where your data is, who has or had access to it and how it can be used.
CamelCaseName 8y ago
Even if you don't give out your peers information, they only need a few data points from your relatives (who may not even know they have given it their information) to figure out who you are.

DangerousPie 8y ago

This may be true, but I don't see how it applies to this story. You need to explicitly opt in for your data to be used for research. So if you have asked for your data to be deleted it would obviously not be used for this kind of work.

a_136_chiffa 8y ago
For now.

OkGoDoIt 8y ago

I just fudged most of my data when I signed up. Things like gender and race I put in correctly since I assume it could affect the results, but birthday slightly off, and any contact information completely off (throwaway email address, fake name, etc). No way in hell I trust any company in the US with my genetic data if it can be tied to me. Only reason I did the kit in the first place was at my girlfriend’s insistence.