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Nebula Genomics – First to offer consumer anonymous sequencing

nebula.org

11–20 of 91 posts

Re: Nebula Genomics – First to offer consumer anonymous sequencing

#11
post #4

When I signed up for 23andme many years ago, it was via a friend in another country, who re-mailed it for me under a fake name and paid in cash. For some time I would log in through a locale-specific 23andme sub-domain until they eventually merged it all together. It wasn't long before they figured out who I was and placed me within my family tree. My fake name now lives among near and distant relatives I was not awa…

I wish I was that smart when buying 23andme. Bitcoin is also not anonymous, unless you happen to mine it up yourself. Does Nebula accept Monero?

Paying anonymously does not resolve the problem of identity by descent / genetic relatedness for a service that retains your genetic data. As relatives sign up with any identifiable bit of information, your anonymity erodes.

Re: Nebula Genomics – First to offer consumer anonymous sequencing

#12
post #3

All this would not be neccessary if they just deleted the data afterwards, but I didn't see this advertised. As vatys explains in his longer comment: You are just as anonymous as the least anonymous person related to you.

> As the understanding of genomics advances, you can stay up-to-date on your genome with the Nebula Library. Then to the privacy policy: > Nebula will store your Personal Information as long as your Account is open, unless you make a request for us to delete all or any of your Personal Information prior to the closing of your Account as described in this Policy. If you decide to close your Account, then Nebula will a…

I'd wonder if Personal data includes derived, calculated and cross reference data.

Probably not

Re: Nebula Genomics – First to offer consumer anonymous sequencing

#14
Neat that they're crafting this kind of product. But, given how easily such full sequences can plot your exact relations with any other unblinded records, this may be largely "DNA Security Theater" against the threat of their malfeasance or compromise.

Also, I can't find anywhere in the Nebula materials describing the chain-of-custody of submitted DNA, & jurisdiction(s) of the sequencing labs.

For example, if provided samples are sent outside the US for sequencing – are they? – I'd have even less confidence they'll be kept secret from local authorities.

Re: Nebula Genomics – First to offer consumer anonymous sequencing

#15
post #12

Earlier quoted context omitted.

> As the understanding of genomics advances, you can stay up-to-date on your genome with the Nebula Library. Then to the privacy policy: > Nebula will store your Personal Information as long as your Account is open, unless you make a request for us to delete all or any of your Personal Information prior to the closing of your Account as described in this Policy. If you decide to close your Account, then Nebula will a…

I'd wonder if Personal data includes derived, calculated and cross reference data. Probably not

Yeah, I'd also be curious why they can't simply send it over to a company which "just so happened" to buy anonymous data, before Nebula "happened" to process your deletion request.

Re: Nebula Genomics – First to offer consumer anonymous sequencing

#16
At some point, I would love to setup something like this but then completely local and open-source. This could e.g. include a sequencing kit (Nanopore MinION sequencer (<$ 1,000) plus necessary consumables), protocols, and in silico workflows for basecalling, SNP calling, and interpretation.

Re: Nebula Genomics – First to offer consumer anonymous sequencing

#18
Why do they build this Rube Goldberg system? Do consumers demand that they can access their data from everywhere so keeping it on some server is necessary? Do they need the data from everyone to do statistics on them? Is it related to selling the analysis software as a subscription?

All in comparison to the obvious solution, send in a sample, receive the resulting data. Plus some offline analysis software that you can buy a license for and maybe update from time to time.

Re: Nebula Genomics – First to offer consumer anonymous sequencing

#19
post #14

Neat that they're crafting this kind of product. But, given how easily such full sequences can plot your exact relations with any other unblinded records, this may be largely "DNA Security Theater" against the threat of their malfeasance or compromise. Also, I can't find anywhere in the Nebula materials describing the chain-of-custody of submitted DNA, & jurisdiction(s) of the sequencing labs. For example, if provide…

Even in the US, California requires 23andme to "bank" the DNA and store it for 10 years along with the name and PII. This is available to authorities.

You cannot request for this to be deleted or destroyed by law.

Re: Nebula Genomics – First to offer consumer anonymous sequencing

#20
post #18

Why do they build this Rube Goldberg system? Do consumers demand that they can access their data from everywhere so keeping it on some server is necessary? Do they need the data from everyone to do statistics on them? Is it related to selling the analysis software as a subscription? All in comparison to the obvious solution, send in a sample, receive the resulting data. Plus some offline analysis software that you ca…

One of the services they provide is giving you reports on new genetic studies and how it relates to your DNA. Another is online genome browser. Both require access to your genome. If you only want to sequence your DNA you can do that, download your files and delete your account. They promise to delete your genome once you close your account.
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