3 ms·

The practice of how this does damage isn't clear to me. But I'm going to test this in the very skin-in-the-game sense. My genome (sequenced by Nebula Genomics)

by arjie 2y ago

The practice of how this does damage isn't clear to me. But I'm going to test this in the very skin-in-the-game sense. My genome (sequenced by Nebula Genomics) is available to anyone who would like it. I have raw FASTQ files which you will have to pay a nominal fee to access. Once upon a time, a friend and I decided we should launch a site where people can submit their genomes and health information so that broad population scale studies can be done. I did submit my stuff to All Of Us and so on, but I think the fact that you need to be special-cased to access the data is probably a loss. So I think it's time to revisit this whole thing. Perhaps I should make VCFs available instead. They're much smaller and may be more accessible for people. In any case, if you want my FASTQs, just email me.

asperous 2y ago
No singular person, it's more the value of having a large database. You visit a coffee shop, a stalker collects your dna from a fingerprint and uses the a leaked or sold database from 23andme to tie it to your identity or home address, etc. Interestingly this also works if a direct relative has used it as well.
- dullcrisp 2y ago
  Couldn’t they find you on facebook instead of sequencing your genome?
  - Larrikin 2y ago
    Does anyone under 40 have a non locked down or an undeleted Facebook account?
- lentil_soup 2y ago
  If a stalker already followed you into a coffee shop surely they have your name and address
Manfred 2y ago
A government could decide they don't like a particular phenotype and decide to visit people based on a database. Something similar happened with the harmless "what's your religion" question on census forms in the late 1930's early 1940's.
- thomassmith65 2y ago
  That's just today. We might live to see targeted diseases. My fear, in the current era, is to be included in countless virtual 'police lineups'. The higher the availability of my DNA, the higher the chance of a false positive affecting me.
  - pests 2y ago
    I read a book years ago that I can't remember the name that your comment reminded me of, although achieved a little differently. In the book a global pandemic broke out but didn't effect Muslims. How was this possible? A in-world marketing campaign promoted "Mecca Water", in which the antidote / preventative was delivered and the Muslim world was made to believe it was holy / blessed / a pilgrimage experience to consume it. I feel it might have been a product of the post-911 world but I did find it interesting and also fear the future as it seems possible today, I'm sure some are trying.
- BugsJustFindMe 2y ago
  The public already has enough information to substantially harm large groups if they want. A simple example being property ownership databases, which are often publicly available on the internet, can be referenced against culturally-suggestive first and last names to find the domestic whereabouts of large numbers of pick-your-group.
dekhn 2y ago
Mine are here, free: https://my.pgp-hms.org/profile/hu80855C https://my.pgp-hms.org/profile/hu80855C (I had this done when I was launching Google Cloud Genomics so I had some data that I could work with without any restrictions. Illumina's genetic counselors told me "you have no genetic risk factors that we can detect" which is more or less what I expected (not that I don't have any- just that Illumina's genetic counselors weren't very good).
- arjie 2y ago
  That's terrific. Here is mine https://my.pgp-hms.org/profile/hu81A8CC https://my.pgp-hms.org/profile/hu81A8CC (created now in response to your comment) FASTQs are much larger (being raw reads) so I'll leave them available via personal contact but this is a good place to host the VCFs. I'll answer the questions etc. as time goes by. Quite a few screenings have revealed a GJB2 variant in my genome, but I don't know if the Nebula sequencing was good enough to detect. Also TIL about Google Cloud's stuff for this. Seems like it's been subsumed into a more general SKU for now https://cloud.google.com/life-sciences/docs/process-genomic-data https://cloud.google.com/life-sciences/docs/process-genomic-...
  - swyx 2y ago
    excellent, i was giong to ask if you're going to test it anyway why not make it free. and now you have. nice. i'm really curious what the attack vector is here. i try to take privacy guys seriously but sometimes theres definitely just fearmongering
    - arjie 2y ago
      Yeah, it's just 100 GiB for the FASTQs. I just don't want to have my personal Cloudflare account upgraded to Pro just to host a bunch of DNA reads. If you'd like I'll give them to you and you can host them, though. I'm not charging for access so much as making sure not to get whacked with a bill myself. The VCFs are much smaller but if you think you have a better variant-calling flow you'll want the FASTQs. I guess I could upload the FASTQs to PGP too, but it doesn't seem right you know (it's going to cost them to store it).
yborg 2y ago
Insurance company sees you have a marker for some chronic illness or cancer or whatever and suddenly you can't get life insurance anywhere or have a massive premium. They could even deduce this if only your parents' DNA is available. Current statute in the US only restricts using this data for health insurance as far as I know; and even if it's straight illegal, the playbook now is just break the rule of law and do whatever you want. I admire your altruism, but our society will not reward you for it.
- robwwilliams 2y ago
  And life insurance.
themagician 2y ago
The main risk is denial of insurance due to genetics. Insurance company buys database and uses it in the future to deny claims or terminate policies.
- robwwilliams 2y ago
  Currently illegal in US. https://en.wikipedia.org/wiki/Genetic_Information_Nondiscrimination_Act https://en.wikipedia.org/wiki/Genetic_Information_Nondiscrim...
vl 2y ago
I'm interested in sequencing my genome (I don't consider this data private - really any determined entity can collect it with just a bit of effort). How was your experience with Nebula Genomics? If you would do it today, would your recommend them or somebody else?
robwwilliams 2y ago
In the George Church crowd. Me too. A high resolution image of a face contains as much or more functionally useful personal data than a vcf. Hard to be optimistic about US trend lines now but I trust GINA to stay the law if the land. https://en.wikipedia.org/wiki/Genetic_Information_Nondiscrimination_Act https://en.wikipedia.org/wiki/Genetic_Information_Nondiscrim... And if I am wrong then my DNA security is about the least of my/our problems.

by arjie 2y ago

asperous 2y ago

No singular person, it's more the value of having a large database. You visit a coffee shop, a stalker collects your dna from a fingerprint and uses the a leaked or sold database from 23andme to tie it to your identity or home address, etc. Interestingly this also works if a direct relative has used it as well.

dullcrisp 2y ago
Couldn’t they find you on facebook instead of sequencing your genome?
- Larrikin 2y ago
  Does anyone under 40 have a non locked down or an undeleted Facebook account?
lentil_soup 2y ago
If a stalker already followed you into a coffee shop surely they have your name and address

Manfred 2y ago

A government could decide they don't like a particular phenotype and decide to visit people based on a database. Something similar happened with the harmless "what's your religion" question on census forms in the late 1930's early 1940's.

thomassmith65 2y ago
That's just today. We might live to see targeted diseases. My fear, in the current era, is to be included in countless virtual 'police lineups'. The higher the availability of my DNA, the higher the chance of a false positive affecting me.
- pests 2y ago
  I read a book years ago that I can't remember the name that your comment reminded me of, although achieved a little differently. In the book a global pandemic broke out but didn't effect Muslims. How was this possible? A in-world marketing campaign promoted "Mecca Water", in which the antidote / preventative was delivered and the Muslim world was made to believe it was holy / blessed / a pilgrimage experience to consume it. I feel it might have been a product of the post-911 world but I did find it interesting and also fear the future as it seems possible today, I'm sure some are trying.
BugsJustFindMe 2y ago
The public already has enough information to substantially harm large groups if they want. A simple example being property ownership databases, which are often publicly available on the internet, can be referenced against culturally-suggestive first and last names to find the domestic whereabouts of large numbers of pick-your-group.

dekhn 2y ago

Mine are here, free: https://my.pgp-hms.org/profile/hu80855C https://my.pgp-hms.org/profile/hu80855C (I had this done when I was launching Google Cloud Genomics so I had some data that I could work with without any restrictions. Illumina's genetic counselors told me "you have no genetic risk factors that we can detect" which is more or less what I expected (not that I don't have any- just that Illumina's genetic counselors weren't very good).

arjie 2y ago
That's terrific. Here is mine https://my.pgp-hms.org/profile/hu81A8CC https://my.pgp-hms.org/profile/hu81A8CC (created now in response to your comment) FASTQs are much larger (being raw reads) so I'll leave them available via personal contact but this is a good place to host the VCFs. I'll answer the questions etc. as time goes by. Quite a few screenings have revealed a GJB2 variant in my genome, but I don't know if the Nebula sequencing was good enough to detect. Also TIL about Google Cloud's stuff for this. Seems like it's been subsumed into a more general SKU for now https://cloud.google.com/life-sciences/docs/process-genomic-data https://cloud.google.com/life-sciences/docs/process-genomic-...
- swyx 2y ago
  excellent, i was giong to ask if you're going to test it anyway why not make it free. and now you have. nice. i'm really curious what the attack vector is here. i try to take privacy guys seriously but sometimes theres definitely just fearmongering
  - arjie 2y ago
    Yeah, it's just 100 GiB for the FASTQs. I just don't want to have my personal Cloudflare account upgraded to Pro just to host a bunch of DNA reads. If you'd like I'll give them to you and you can host them, though. I'm not charging for access so much as making sure not to get whacked with a bill myself. The VCFs are much smaller but if you think you have a better variant-calling flow you'll want the FASTQs. I guess I could upload the FASTQs to PGP too, but it doesn't seem right you know (it's going to cost them to store it).

yborg 2y ago

Insurance company sees you have a marker for some chronic illness or cancer or whatever and suddenly you can't get life insurance anywhere or have a massive premium. They could even deduce this if only your parents' DNA is available. Current statute in the US only restricts using this data for health insurance as far as I know; and even if it's straight illegal, the playbook now is just break the rule of law and do whatever you want. I admire your altruism, but our society will not reward you for it.

robwwilliams 2y ago
And life insurance.

themagician 2y ago

The main risk is denial of insurance due to genetics. Insurance company buys database and uses it in the future to deny claims or terminate policies.

robwwilliams 2y ago
Currently illegal in US. https://en.wikipedia.org/wiki/Genetic_Information_Nondiscrimination_Act https://en.wikipedia.org/wiki/Genetic_Information_Nondiscrim...

vl 2y ago

I'm interested in sequencing my genome (I don't consider this data private - really any determined entity can collect it with just a bit of effort). How was your experience with Nebula Genomics? If you would do it today, would your recommend them or somebody else?

robwwilliams 2y ago

In the George Church crowd. Me too. A high resolution image of a face contains as much or more functionally useful personal data than a vcf. Hard to be optimistic about US trend lines now but I trust GINA to stay the law if the land. https://en.wikipedia.org/wiki/Genetic_Information_Nondiscrimination_Act https://en.wikipedia.org/wiki/Genetic_Information_Nondiscrim... And if I am wrong then my DNA security is about the least of my/our problems.