Hacker News Board Hacker News, browsed like a classic message board
Live data from Hacker News

Nebula Genomics – First to offer consumer anonymous sequencing

nebula.org

Post reply on HN
Print view View original

31–40 of 91 posts

Re: Nebula Genomics – First to offer consumer anonymous sequencing

#31

Post by sitharus »

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.

You don't need to keep paying, you can just get a one-month subscription and download your genome once it's sequenced. The subscription is just for the alerting.

Re: Nebula Genomics – First to offer consumer anonymous sequencing

#32

Post by danbruc »

pointlessone wrote: post #20
danbruc wrote: 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.

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.

Re: Nebula Genomics – First to offer consumer anonymous sequencing

#33

Post by pas »

winwang wrote: post #15
sorokod wrote: post #12

Earlier quoted context omitted.

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.

Yes, it's a bit hard to take them seriously as a US company. (I wonder would it matter if they were CA based instead of NY? Does the CCPA provide some better effective data protection - at least awareness, similar to the GDPR? And does NY have something similar?)

Re: Nebula Genomics – First to offer consumer anonymous sequencing

#34

Post by gillesjacobs »

I tried Nebula's kit but refunded after two attempts. They took on average 3 months to attempt to sequence my sample (due to sample batching) and they both failed. It costs me a fair bit to send the sample to Georgia (US) every time so the cost and wait times were too much.

It's a matter of luck whether your sequencing fails though so I will try again when they offer truly anonymous sequencing (my last attempts were eponymous).

Their website has been saying for at least two years that Anonymous Sequencing is coming. So take their product launch timeline with a grain of salt. In any case true anonymity and the price of 175usd are really impressive if they iron out the logistics.

Re: Nebula Genomics – First to offer consumer anonymous sequencing

#35

Post by DevX101 »

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 did the same, sans the cash payment. I REALLY wanted my DNA sequenced but they were the only consumer option at the time. Anonymous sequencing is the way to go. There's just too much opportunity for abuse or incompetence around my most private data.

Re: Nebula Genomics – First to offer consumer anonymous sequencing

#36

Post by etdr »

I had my genome sequenced by Nebula. Honestly I know I shouldn't have from a privacy standpoint (especially since I signed up with my real name and details) but the idea of having my entire genome stored on my hard drive was too tempting for me, and now that's what I have. I have started looking into the software to analyze it, and I'm happy that it's a purchase that will be valid my entire life.

Re: Nebula Genomics – First to offer consumer anonymous sequencing

#37

Post by etdr »

jbstack wrote: post #30
hh3k0 wrote: post #28

Earlier quoted context omitted.

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.

Generally agree with this, though they do frequent sales that bring the lifetime price down substantially. For myself, I thought that the bundled sequencing plus lifetime membership ($400) was fair just for the sequencing itself, so I didn't mind too much.

Re: Nebula Genomics – First to offer consumer anonymous sequencing

#39

Post by DevX101 »

Just looked at the team and it's founded by George Church, professor at Harvard/MIT. There's certainly been some great research to come from his labs, but this guy is on the board of almost every biotech company to emerge from the Boston area. His wikipedia says he cofounded 50 biotech companies, lol. There's a few of these 'rockstar' professors that collect companies like infinity stones from all the students to pass through their labs.

I wonder how many of these companies were just his name tacked on for credibility vs him being deeply involved in the product development of direction of the company.

Re: Nebula Genomics – First to offer consumer anonymous sequencing

#40

Post by kevinmchugh »

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…

> 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.

Post reply on HN