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Nebula Genomics – First to offer consumer anonymous sequencing

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Re: Nebula Genomics – First to offer consumer anonymous sequencing

#4

Post by vatys »

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 aware had signed up themselves or their parents/grandparents. They know who I am, who my siblings and cousins and aunts and uncles are, etc. This was always going to happen as soon as I sent them my sample.

I never believed my anonymity trick would truly work, I just wanted to make it sufficiently difficult for when 23andme inevitably sold out, got gobbled up, or turned evil. I learned what I wanted from the service, and have only logged in once a year or so since to see if they updated any findings or disease studies.

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.

Re: Nebula Genomics – First to offer consumer anonymous sequencing

#5

Post by carbocation »

aquafox wrote: 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 automatically destroy all Personal Information related to your account, including User Data, Survey Data, and Genetic Data.

So, my reading of all of this is aligned with how you and vatys have read it, too.

Re: Nebula Genomics – First to offer consumer anonymous sequencing

#7

Post by CuriousCosmic »

aquafox wrote: 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.

That of course is an option. It's in their privacy policy. Tbh that you could demand they delete your data when you were done with them is the entire reason I actually used them. There are definitely benefits to keeping your data with them though. The research they contribute to is useful and the relevance is easy to interpret through their client.

I'll probably delete everything off their site in the event it looks like they might get sold but for now I figure it's fairly well guarded and they keep most of it offline anyways.

Re: Nebula Genomics – First to offer consumer anonymous sequencing

#8

Post by Euphorbium »

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 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?

Re: Nebula Genomics – First to offer consumer anonymous sequencing

#9

Post by autoexec »

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.

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