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From the original article [1]: "If the idea of investigators poking through your DNA freaks you out, both Ancestry.com and 23andMe have options to delete your i

From the original article [1]: "If the idea of investigators poking through your DNA freaks you out, both Ancestry.com and 23andMe have options to delete your information with the sites. 23andMe says it will delete information within 30 days upon request." One may wonder if they treat this policy much like Ashley Madison treated their removal promise. [1]: http://fusion.net/story/215204/law-enforcement-agencies-are-asking-ancestry-com-and-23andme-for-their-customers-dna/ http://fusion.net/story/215204/law-enforcement-agencies-are-...

chaostheory 11y ago
According to a customer rep, the 3rd party company, LabCorp, that actually processes the genotype testing will keep all the data for up to two years regardless of a deletion request. "Account Closure When closing an account, we remove all Genetic Information within your account (or profile) within thirty (30) days of our receipt of your request. As stated in the applicable Consent Document, however, Genetic Information and/or Self-Reported Information that you have previously provided and for which you have given consent to use in 23andWe Research will not be removed from ongoing or completed studies that use the information. Our contracted genotyping laboratory may also retain your Genetic Information as required by local law and we may retain backup copies for a limited period of time pursuant to our data protection policies. In addition, we retain limited Registration Information related to your order history (e.g., name, contact, and transaction data) for accounting and compliance purposes. You are able to read both documents in full at: https://www.23andme.com/about/tos/ https://www.23andme.com/about/tos/ https://www.23andme.com/about/privacy/ https://www.23andme.com/about/privacy/ In our TOS it states, 'Our contracted genotyping laboratory may also retain your Genetic Information as required by local law and we may retain backup copies for a limited period of time pursuant to our data protection policies.' What this means is the data file generated from the processing is stored, though the sample is discarded shortly after the processing of the sample is complete (if biostorage is declined). This data file is stored for up to two years. National Genetics Institute (NGI), our contracted laboratory, is required to keep the results of the analysis for up to two years as required by CLIA. Under HIPAA, LabCorp (this includes NGI) is required by law to maintain the privacy of our customers. You can read LabCorp's privacy statement here https://www.labcorp.com/wps/portal/!ut/p/c0/04_SB8K8xLLM9MSSzPy8xBz9CP0os_hQV5NgQ09LYwP_MGdXAyMvRzNfT9dgY0cLM_2CbEdFAAFB4uk!/"* https://www.labcorp.com/wps/portal/!ut/p/c0/04_SB8K8xLLM9MSS... EDIT: According to someone who currently works at 23andme, they never delete data - ever. On multiple occassions when I bring data deletion up, there's a puzzled look and a quick denial that they ever delete data regardless of customer requests. Which is accurate if you read the above TOS... they only delete data that ties you to your submitted genotype data: "however, Genetic Information and/or Self-Reported Information that you have previously provided and for which you have given consent to use in 23andWe Research will not be removed from ongoing or completed studies that use the information"
- vitd 11y ago
  When you say "According to someone who works there" does "there" mean at 23andme, or at the 3rd party company?
  - chaostheory 11y ago
    23andme - I'll update my comment
runlevel1 11y ago
Under federal regulations, the lab that does the sequencing is apparently required to keep their results for 2 years. [42 CFR § 493.1105]: https://www.law.cornell.edu/cfr/text/42/493.1105 https://www.law.cornell.edu/cfr/text/42/493.1105

chaostheory 11y ago

According to a customer rep, the 3rd party company, LabCorp, that actually processes the genotype testing will keep all the data for up to two years regardless of a deletion request. "Account Closure When closing an account, we remove all Genetic Information within your account (or profile) within thirty (30) days of our receipt of your request. As stated in the applicable Consent Document, however, Genetic Information and/or Self-Reported Information that you have previously provided and for which you have given consent to use in 23andWe Research will not be removed from ongoing or completed studies that use the information. Our contracted genotyping laboratory may also retain your Genetic Information as required by local law and we may retain backup copies for a limited period of time pursuant to our data protection policies. In addition, we retain limited Registration Information related to your order history (e.g., name, contact, and transaction data) for accounting and compliance purposes. You are able to read both documents in full at: https://www.23andme.com/about/tos/ https://www.23andme.com/about/tos/ https://www.23andme.com/about/privacy/ https://www.23andme.com/about/privacy/ In our TOS it states, 'Our contracted genotyping laboratory may also retain your Genetic Information as required by local law and we may retain backup copies for a limited period of time pursuant to our data protection policies.' What this means is the data file generated from the processing is stored, though the sample is discarded shortly after the processing of the sample is complete (if biostorage is declined). This data file is stored for up to two years. National Genetics Institute (NGI), our contracted laboratory, is required to keep the results of the analysis for up to two years as required by CLIA. Under HIPAA, LabCorp (this includes NGI) is required by law to maintain the privacy of our customers. You can read LabCorp's privacy statement here https://www.labcorp.com/wps/portal/!ut/p/c0/04_SB8K8xLLM9MSSzPy8xBz9CP0os_hQV5NgQ09LYwP_MGdXAyMvRzNfT9dgY0cLM_2CbEdFAAFB4uk!/"* https://www.labcorp.com/wps/portal/!ut/p/c0/04_SB8K8xLLM9MSS... EDIT: According to someone who currently works at 23andme, they never delete data - ever. On multiple occassions when I bring data deletion up, there's a puzzled look and a quick denial that they ever delete data regardless of customer requests. Which is accurate if you read the above TOS... they only delete data that ties you to your submitted genotype data: "however, Genetic Information and/or Self-Reported Information that you have previously provided and for which you have given consent to use in 23andWe Research will not be removed from ongoing or completed studies that use the information"

vitd 11y ago
When you say "According to someone who works there" does "there" mean at 23andme, or at the 3rd party company?
- chaostheory 11y ago
  23andme - I'll update my comment

runlevel1 11y ago

Under federal regulations, the lab that does the sequencing is apparently required to keep their results for 2 years. [42 CFR § 493.1105]: https://www.law.cornell.edu/cfr/text/42/493.1105 https://www.law.cornell.edu/cfr/text/42/493.1105