[bnjemian]

I find this fascinating. I once was considering getting my whole genome sequenced from Nebula but then I realized that their sequencing was being done by Beijing Genomics Institute (BGI). The quality of sequencing from BGI is very high, but the reality is it has some fairly established ties to the PLA (to the extent that it's considered for sanctions by lawmakers). There's been concern in the bioinformatics community for years that the CCP/PLA, through BGI, has been amassing substantial genomics data on people (most notably pregnant women). Unclear why, but – given the authoritarianism – the mind can go places. That's the thing with running any genomics-oriented organization; at minimum, pretty sordid optics can emerge if you're not careful.

I bring this up because Nebula is clearly making a play for anonymity which, in my mind, is strange. Perhaps deceitful. The thing about genetic data, especially WGS, is that it's hopelessly not anonymous. Sure, it can be protected, but given the world we live in (hacks, data brokers, etc.), it's the type of data that will likely get out into the wild. This past week at 23 and Me is a case in point. The comment from another poster here about whether they delete it or not is an important one. I suspect they don't; for a while Nebula was touting a setup where they held onto your data and you could license it for use by pharmaceutical companies or researchers and receive payment. Not sure if that's still a thing. Either way, I find the notion of "anonymity" here very dubious, even if you pay with Monero or similar, use a PO box, etc. But that's kinda the reality – these genomics companies aren't especially open about a several key facts when you get your genome sequence. Another example is that they don't make clear that when you get your genome sequenced you are effectively unmasking the genome of your extended family.

[mfld]

AFAIK they do no longer rely on BGI for sequencing, but set-up their own facilities.