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Nebula Genomics – First to offer consumer anonymous sequencing

nebula.org

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Re: Nebula Genomics – First to offer consumer anonymous sequencing

#71

Post by pointlessone »

kevinmchugh wrote: post #61
pointlessone wrote: post #20

Earlier quoted context omitted.

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.

It's interesting to imagine how this would've worked in 1995 or something, if the sequencing was possible. You'd have done the sample, and in response they'd send you three CD-ROMs. The first is the visualizer program which you'd install as an executable. The other discs are your genome*. If your spouse or kid got their genome sequenced, you'd get two more discs. Every year the company would print an update to the di…

Depending on format your genome can be upwards of 100 GB. Granted they probably don't use full sequencing for analysis. They probably use just genetic variants, which is about 300 MB, so would fit a single CD.

I imagine a couple of floppies a year might've been cheaper in 1995 than a CD.

Re: Nebula Genomics – First to offer consumer anonymous sequencing

#72

Post by pointlessone »

danbruc wrote: post #32
pointlessone wrote: post #20

Earlier quoted context omitted.

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.

Those things you can do locally as well, you might just need an update from time to time to make new analyses available. At least unless they require doing statistics or whatnot on all the genomes they have.

Depending on format full sequencing can be larger than 100 GB. It's possible to keep that locally on most devices but it's a sizeable chunk of storage for relatively rarely used data.

They do use statistics in their reports. One of the numbers they give with each report is where you are in the population for that particular report. E.g. 85th percentile for this thing in the population.

Re: Nebula Genomics – First to offer consumer anonymous sequencing

#73

Post by collegeburner »

dannyw wrote: post #19
gojomo wrote: 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.

It's all about user privacy until the jackboots might want that data, then suddenly it's Very Important and Law Enforcement Critical!

Re: Nebula Genomics – First to offer consumer anonymous sequencing

#74

Post by rsync »

Reading the recent New Yorker article about genomic sleuthing[1] caused me to conclude that there is no such thing as anonymous genomic analysis - at least not the type that analyzes your genome to identify risks and commonalities.

All it takes are a few related (even distantly related) samples and a skilled observer can quickly narrow down where on a genetic tree a sample came from - without knowing anything about the person at all.

[1] https://www.newyorker.com/magazine/2021/11/22/how-your-famil...

Re: Nebula Genomics – First to offer consumer anonymous sequencing

#75

Post by gruez »

hifreq wrote: post #65
kevinmchugh wrote: post #40

Earlier quoted context omitted.

> While I truly appreciate the concept of bringing privacy and anonymity to this field, it's worth considering we are all quite easy to identify using these samples. Yes, as long as they have the data. If a company would process the sample, send me a thumb drive of my information, and not retain a copy, that data can't leak because it doesn't exist.

> not retain a copy Unfortunately this is just one step away from a blog post where the CEO apologizes for letting down their customers by keeping copies of all data in an unsecured s3 bucket that was downloaded in its entirety by a 13 year old "hacker".

If you prominently advertised that you don't retain data, but it turned out that you did and it got leaked, that's a straightforward case of fraud. Given that the services would be advertised over the internet, it probably counts as wire fraud which means the feds would get involved. On the other hand if they had permission to keep your data and they got hacked, it becomes a messy tort case where the plaintiffs has to prove that the company didn't try hard enough to secure the data. In other words, the point isn't to guarantee that your data won't be leaked/hacked, it's to make it straightforward to go after you if you decide to lie.

This is why I won't use any genome sequencing service that has a bunch of ancillary services attached (eg. analyzing your ancestry, or figuring out what diseases you're at risk for), and you have to request deletion of data. The fact they provide such services means that your data is getting automatically uploaded to the cloud, probably resulting in multiple copies to different systems/databases/vendors. Even though you can theoretically request deletion, all those copies means there's a non-negligible chance that there's a copy lying around in a decommissioned s3 bucket that they didn't delete. If they service promises sample -> sequencing machine -> lab computer -> [PGP encrypted email/mailed CD], that cuts the risk considerably.

Re: Nebula Genomics – First to offer consumer anonymous sequencing

#76

Post by EarthAmbassador »

dyeje wrote: post #64
abecedarius wrote: post #58

Earlier quoted context omitted.

Consider a service which promised to scan your genome, send you the data file, and delete the sample, and their copy of the file on confirmation of your receipt. This is still vulnerable to dishonesty, but only transiently. There's nothing logically impossible about such a service, and I'd trust it modulo actual red flags. Too bad afaik nobody's offering it. Once they're archiving their copy I just don't see how they…

I thought about offering a product like this but the market seems tough given: 1. Most people don’t care about the privacy aspect 2. People who already got a test from 23andme, Ancestry, etc are unaddressable

People are conditioned not care, but I seriously doubt that is avoid argument for not providing anonymity as a default product considering the risks when genome data is breached.

Surely, it’s not that costly to delete data? The only reason to keep this data is for ulterior motives like monetizing.

Re: Nebula Genomics – First to offer consumer anonymous sequencing

#77

Post by EarthAmbassador »

dannyw wrote: post #19
gojomo wrote: 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.

That’s outrageous. Paying for a service should not mean concurrent subscription to populating police databases. I’m a bit surprised California would permit this.

Re: Nebula Genomics – First to offer consumer anonymous sequencing

#78

Post by danbruc »

pointlessone wrote: post #72
danbruc wrote: post #32

Earlier quoted context omitted.

Those things you can do locally as well, you might just need an update from time to time to make new analyses available. At least unless they require doing statistics or whatnot on all the genomes they have.

Depending on format full sequencing can be larger than 100 GB. It's possible to keep that locally on most devices but it's a sizeable chunk of storage for relatively rarely used data. They do use statistics in their reports. One of the numbers they give with each report is where you are in the population for that particular report. E.g. 85th percentile for this thing in the population.

$10 USB flash drive.

Re: Nebula Genomics – First to offer consumer anonymous sequencing

#79

Post by NickM »

sjaak wrote: post #38

They mention this: “Access to blockchain based secure storage” What does that even mean? And do they completely destroy the sampled data from all their systems incl. backups? Can’t find that anywhere. If not: is it really anonymous?

Yeah that one bullet point destroyed any trust I might have otherwise given this service. I was excited to try it until they mentioned blockchain.

There’s no plausible reason to use a blockchain instead of a traditional database, and many possible risks/downsides. So either the company is incompetent, or they’re not really using a blockchain and their marketing is misleading, but either way it leaves a bad taste in my mouth.

Re: Nebula Genomics – First to offer consumer anonymous sequencing

#80

Post by abecedarius »

EarthAmbassador wrote: post #76
dyeje wrote: post #64

Earlier quoted context omitted.

I thought about offering a product like this but the market seems tough given: 1. Most people don’t care about the privacy aspect 2. People who already got a test from 23andme, Ancestry, etc are unaddressable

People are conditioned not care, but I seriously doubt that is avoid argument for not providing anonymity as a default product considering the risks when genome data is breached. Surely, it’s not that costly to delete data? The only reason to keep this data is for ulterior motives like monetizing.

I'd pay more for credible privacy. You'd think this could support a small business, even assuming there's no angle for a grand VC-funded startup. (Yes, easy for me to say.)

Nebula actually did use to let you download your data and tell them to delete it. When I was looking last year, though, they'd moved to some new model (which I assume this post was about).

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