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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

#21

Post by pointlessone »

ros86 wrote: post #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.

You can snatch a 30x full genome sequence from Nebula at $100-150 on sales they do a few times a year. Open-source is cool but prob not economically feasible unless you’ll be using it for all your extended family or something.

Re: Nebula Genomics – First to offer consumer anonymous sequencing

#22

Post by ros86 »

pointlessone wrote: post #21
ros86 wrote: post #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.

You can snatch a 30x full genome sequence from Nebula at $100-150 on sales they do a few times a year. Open-source is cool but prob not economically feasible unless you’ll be using it for all your extended family or something.

My point is not about having the cheapest solution. I just don't trust anyone else with my genomic information, even if they say it's anonymous. (I'm a biotech engineer, from Europe; maybe that explains my reservation ;-))

Re: Nebula Genomics – First to offer consumer anonymous sequencing

#23

Post by vatys »

autoexec wrote: post #9
vatys wrote: 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 just wanted to make it sufficiently difficult for when 23andme inevitably sold out, got gobbled up, or turned evil. You might as well add "hacked" to that list given recent events.

Yes, I definitely considered that as well. Basically, I knew that 23andme data would eventually exist outside 23andme, whether that be via hack, acquisition, or eminent domain.

I accepted that and did it anyway, taking steps to at least not be directly associated with my sequence, even if my association can be inferred or derived later. My main concern is that their testing would identify something which in the future would be a "pre-existing condition" and get me denied medical care, but there is certainly a long list of other possible consequences.

At this point I don't trust any company or agency that collects and uses data, or the promises made in any privacy policy, but I also don't lose any sleep over it.

Re: Nebula Genomics – First to offer consumer anonymous sequencing

#25

Post by jtsiskin »

vatys wrote: 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…

…if you wanted full anonymity, why did you turn on DNA relative sharing? Why don’t you turn it off now? Or do you mean, you assume they could place your profile within a tree, if they wanted to?

Re: Nebula Genomics – First to offer consumer anonymous sequencing

#26

Post by jbstack »

This peaked my interest until I saw:

"Requires [paid] Nebula Membership".

I see zero reason that I should need to pay them a subscription when all I want is a one-off product. Sure, I can see the use in being alerted when new genetic diseases are discovered, but that should be my choice. It's frustrating that everything is becoming subscription based these days.

Re: Nebula Genomics – First to offer consumer anonymous sequencing

#27

Post by qiine »

ros86 wrote: post #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.

to me this is like blood testing at home, I am surprised this is still not a thing

Re: Nebula Genomics – First to offer consumer anonymous sequencing

#28

Post by hh3k0 »

jbstack wrote: post #26

This peaked my interest until I saw: "Requires [paid] Nebula Membership". I see zero reason that I should need to pay them a subscription when all I want is a one-off product. Sure, I can see the use in being alerted when new genetic diseases are discovered, but that should be my choice. It's frustrating that everything is becoming subscription based these days.

They offer a life-time membership that requires a one-time payment.

Re: Nebula Genomics – First to offer consumer anonymous sequencing

#29

Post by tdsone3 »

If you have a publicly available photo of yourself (e.g. public social media), it's possible to match that to your genomic sequence. I.e. you already have to be anonymous online to have a chance that a private company cannot reidentify you.

https://www.science.org/doi/10.1126/sciadv.abg3296

Re: Nebula Genomics – First to offer consumer anonymous sequencing

#30

Post by jbstack »

hh3k0 wrote: post #28
jbstack wrote: post #26

This peaked my interest until I saw: "Requires [paid] Nebula Membership". I see zero reason that I should need to pay them a subscription when all I want is a one-off product. Sure, I can see the use in being alerted when new genetic diseases are discovered, but that should be my choice. It's frustrating that everything is becoming subscription based these days.

They offer a life-time membership that requires a one-time payment.

A life-time membership costs 12 - 23 times more than the monthly subscription fee depending which package you choose. I'm not sure that paying a huge lump sum for a subscription I don't want is a good alternative to taking a monthly subscription that I don't want.
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