5 ms·

Are there any "safer" options for doing genetic testing? From a privacy perspective mostly.

by rolisz 1y ago

mylons 1y ago
not really. i work in the field. any commercial offering is likely subject to this. every company i've worked for that does personal testing eventually gives their data to someone: other companies, or law enforcement. it's even worse if one of your siblings or close relatives does this. people have been implicated in crimes due to relatives getting tested. on the one hand that's great they're closing cold cases, but the disaster where this is used incorrectly against you is horrifying.
- tantalor 1y ago
  I'd argue that even using the gene database to correctly nab wrongdoers is horrifying. The ends do not justify the means. The police should not have an easily searchable database of everyone's genetic profile, no matter how they gathered it.
  - mylons 1y ago
    i agree with you
- drdaeman 1y ago
  Does it mean that no company honestly offers a "we sequence your generic material, send you data back, and completely forget the whole affair afterwards, all genetic data wiped on our side with the only copy left being yours - no strings attached" type of service? In a jurisdiction that doesn't require labs to retain anything (so non-US, as US has CLIA). I assume it would cost significantly more than usual subscription/research-subsidized services, of course. I'm not interested in services of finding relatives or health coach gimmicks, I just want an one-time purchase of a raw data blob with solid personal privacy guarantees. Am I asking for too much?
  - mylons 1y ago
    as far as i know this is not offered. my assumption is there's little to no demand. if there is a ton of demand, i'd be happy to start this company :)
- FL33TW00D 1y ago
  Why isn't there a company that just "wraps" Illumina. Zero partners minus the Illumina machine. Seems obvious.
  - mylons 1y ago
    what do you mean? i think you more or less described every personal genetics testing company as they start out. they use the illumina machine to do the testing and develop custom assays with said machine
    - FL33TW00D 1y ago
      "every company i've worked for that does personal testing eventually gives their data to someone: other companies, or law enforcement." Why isn't there a privacy focused company that just doesn't do this.
      - mylons 1y ago
        as far as i know there just isn't demand for one's own data like this. people have kinda tried, there's some weird web3 offerings that allegedly do this so you can monetize your data but afaik nobody uses that. i mentioned in an earlier comment i'd be happy to start this company if there were that kinda demand. it'd cost you around $1000 USD to get this done and get a hard drive mailed to you with raw data (fastq files). EDIT: it probably would be cool if this kind of thing existed so consumers could shop their analysis around. it might actually open up some consumer bioinformatics startups
        mfld 1y ago
        I agree with the low demand for more expensive personal WGS. I think you can mostly get what you want with ySeq: currently 400$ for 90 GigaBases WGS sequencing, with the data sent to you via SD card. You can request immediate data deletion. Only genealogical analysis is included, everything else is DIY.
        1y ago
vintermann 1y ago
What do you want out of it? There are basically three things people pay/accept the privacy risks for: ethnicity estimates, health/traits, and finding family. In my opinion only the third is really worth it. Ethnicity estimates are a curiosity, are not accurate at the level most of us care about in genealogy - the big exception is African descendants of slaves, who have both higher accuracy due to the genetic diversity of Africa, and fewer other options. But that really puts it closer to family discovery, which is a real use case. Caring who you're related to and how is damn near a cultural universal, and some of us care a lot. Health/traits stuff I see as little better than astrology. Yes, you can find out stuff like if you have blue eyes - but so can a mirror tell me. Odds are you already know yourself far better than the DNA traits testing companies can infer from your DNA.

Are there any "safer" options for doing genetic testing? From a privacy perspective mostly.

by rolisz 1y ago

Are there any "safer" options for doing genetic testing? From a privacy perspective mostly.

not really. i work in the field. any commercial offering is likely subject to this. every company i've worked for that does personal testing eventually gives their data to someone: other companies, or law enforcement. it's even worse if one of your siblings or close relatives does this. people have been implicated in crimes due to relatives getting tested. on the one hand that's great they're closing cold cases, but the disaster where this is used incorrectly against you is horrifying.

tantalor 1y ago
I'd argue that even using the gene database to correctly nab wrongdoers is horrifying. The ends do not justify the means. The police should not have an easily searchable database of everyone's genetic profile, no matter how they gathered it.
- mylons 1y ago
  i agree with you
drdaeman 1y ago
Does it mean that no company honestly offers a "we sequence your generic material, send you data back, and completely forget the whole affair afterwards, all genetic data wiped on our side with the only copy left being yours - no strings attached" type of service? In a jurisdiction that doesn't require labs to retain anything (so non-US, as US has CLIA). I assume it would cost significantly more than usual subscription/research-subsidized services, of course. I'm not interested in services of finding relatives or health coach gimmicks, I just want an one-time purchase of a raw data blob with solid personal privacy guarantees. Am I asking for too much?
- mylons 1y ago
  as far as i know this is not offered. my assumption is there's little to no demand. if there is a ton of demand, i'd be happy to start this company :)
FL33TW00D 1y ago
Why isn't there a company that just "wraps" Illumina. Zero partners minus the Illumina machine. Seems obvious.
- mylons 1y ago
  what do you mean? i think you more or less described every personal genetics testing company as they start out. they use the illumina machine to do the testing and develop custom assays with said machine
  - FL33TW00D 1y ago
    "every company i've worked for that does personal testing eventually gives their data to someone: other companies, or law enforcement." Why isn't there a privacy focused company that just doesn't do this.
    - mylons 1y ago
      as far as i know there just isn't demand for one's own data like this. people have kinda tried, there's some weird web3 offerings that allegedly do this so you can monetize your data but afaik nobody uses that. i mentioned in an earlier comment i'd be happy to start this company if there were that kinda demand. it'd cost you around $1000 USD to get this done and get a hard drive mailed to you with raw data (fastq files). EDIT: it probably would be cool if this kind of thing existed so consumers could shop their analysis around. it might actually open up some consumer bioinformatics startups
      - mfld 1y ago
        I agree with the low demand for more expensive personal WGS. I think you can mostly get what you want with ySeq: currently 400$ for 90 GigaBases WGS sequencing, with the data sent to you via SD card. You can request immediate data deletion. Only genealogical analysis is included, everything else is DIY.
        1y ago

vintermann 1y ago

What do you want out of it? There are basically three things people pay/accept the privacy risks for: ethnicity estimates, health/traits, and finding family. In my opinion only the third is really worth it. Ethnicity estimates are a curiosity, are not accurate at the level most of us care about in genealogy - the big exception is African descendants of slaves, who have both higher accuracy due to the genetic diversity of Africa, and fewer other options. But that really puts it closer to family discovery, which is a real use case. Caring who you're related to and how is damn near a cultural universal, and some of us care a lot. Health/traits stuff I see as little better than astrology. Yes, you can find out stuff like if you have blue eyes - but so can a mirror tell me. Odds are you already know yourself far better than the DNA traits testing companies can infer from your DNA.