[HN Gopher] Nebula Genomics - First to offer consumer anonymous ...
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       Nebula Genomics - First to offer consumer anonymous sequencing
        
       Author : all2
       Score  : 154 points
       Date   : 2023-12-09 05:38 UTC (17 hours ago)
        
 (HTM) web link (nebula.org)
 (TXT) w3m dump (nebula.org)
        
       | aquafox wrote:
       | 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.
        
         | carbocation wrote:
         | > _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.
        
           | sorokod wrote:
           | I'd wonder if Personal data includes derived, calculated and
           | cross reference data.
           | 
           | Probably not
        
             | winwang wrote:
             | 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.
        
               | pas wrote:
               | 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?)
        
         | jacoblambda wrote:
         | 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.
        
       | vatys wrote:
       | 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.
        
         | Euphorbium wrote:
         | 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?
        
           | carbocation wrote:
           | Paying anonymously does not resolve the problem of identity
           | by descent / genetic relatedness for a service that retains
           | your genetic data. As relatives sign up with any identifiable
           | bit of information, your anonymity erodes.
        
         | autoexec wrote:
         | > 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.
        
           | vatys wrote:
           | 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.
        
             | hifreq wrote:
             | There used to be a way to request full data deletion on
             | their website. Probably too late to do it now for people
             | who are included in the hack, but could still be a good
             | idea to do it asap.
        
         | jtsiskin wrote:
         | ...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?
        
         | DevX101 wrote:
         | 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.
        
         | kevinmchugh wrote:
         | > 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.
        
           | hifreq wrote:
           | > 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".
        
             | gruez wrote:
             | 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.
        
         | abecedarius wrote:
         | 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 can credibly promise privacy in the longer term.
         | 
         | Last I looked it didn't seem really practical to just buy your
         | own sequencer.
        
           | dyeje wrote:
           | 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
        
             | EarthAmbassador wrote:
             | 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.
        
       | jampekka wrote:
       | .org domain for a commercial entity gives a scammy smell.
        
       | gojomo wrote:
       | 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 provided samples are sent outside the US for
       | sequencing - are they? - I'd have even less confidence they'll be
       | kept secret from local authorities.
        
         | dannyw wrote:
         | 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.
        
           | collegeburner wrote:
           | It's all about user privacy until the jackboots might want
           | that data, then suddenly it's Very Important and Law
           | Enforcement Critical!
        
           | EarthAmbassador wrote:
           | 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.
        
       | ros86 wrote:
       | 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.
        
         | pointlessone wrote:
         | 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.
        
           | ros86 wrote:
           | 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 ;-))
        
         | qiine wrote:
         | to me this is like blood testing at home, I am surprised this
         | is still not a thing
        
       | IndySun wrote:
       | Reading their blurb, well intentioned or not, it becomes apparent
       | the service will be a boon to someone other than yourself,
       | possibly nefariously, sending your specimen and receiving your
       | details.
        
       | danbruc wrote:
       | 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 can buy a license for and maybe update from time to
       | time.
        
         | pointlessone wrote:
         | 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.
        
           | danbruc wrote:
           | 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.
        
             | pointlessone wrote:
             | 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.
        
               | danbruc wrote:
               | $10 USB flash drive.
        
           | plagiarist wrote:
           | Do they promise not to share the information with third
           | parties who won't delete my genome when I close my account?
        
           | kevinmchugh wrote:
           | 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 disease
           | database on more CDs, and make them available for a
           | relatively small price, probably exclusively by mail.
           | 
           | Obviously there's some aspects of this that suck, but it's
           | interesting to see how it's so much better for privacy,
           | because data hoarding wasn't viable at scale or as a
           | business.
           | 
           | * Two, because a genome is > 700MB, so it won't fit on a
           | single disc. How annoying the size limit of a CD would've
           | been if you had to solve this problem at work!
        
             | pointlessone wrote:
             | 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.
        
       | andersrs wrote:
       | Seems like a great honey pot for the three letter agencies once
       | they stitch it together with your stupid aunt Janice at 23andMe.
        
         | Podgajski wrote:
         | This coming from someone who is obviously using the Internet
         | and a computer...
        
       | jbstack wrote:
       | 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.
        
         | hh3k0 wrote:
         | They offer a life-time membership that requires a one-time
         | payment.
        
           | jbstack wrote:
           | 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.
        
             | etdr wrote:
             | 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.
        
         | sitharus wrote:
         | 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.
        
       | tdsone3 wrote:
       | 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
        
         | ryanschneider wrote:
         | Seems like the technique only works in highly controlled
         | scenarios (e.g. you have tens of phenotypes and images and want
         | to have a better than random chance of assigning one to the
         | other):
         | 
         | > Nevertheless, re-identification risk in the wild does not
         | appear to be especially high. While we observe a success rate
         | as high as 25%, this is only achieved when the genomic dataset
         | is extremely small, on the order of 10 individuals. In
         | contrast, success rate for top 1 matching drops quickly and is
         | negligible for populations of more than 100 individuals.
         | Moreover, it should be kept in mind that this result assumes
         | that we can predict the phenotypes perfectly.
        
           | tdsone3 wrote:
           | That's a good catch. This study uses images for
           | reidentification. I wonder which other factors, not contained
           | in an image could be used for reidentifying someone and by
           | how much that would increase the reidentification accuracy.
        
       | gillesjacobs wrote:
       | 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.
        
       | etdr wrote:
       | 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.
        
         | Podgajski wrote:
         | I was the same way. I have a genetic condition in my family of
         | unknown origin and the risk of anything happening. My genetics
         | outweighed the possibility, and what turned out to be the
         | evidence of what my even partial genome could uncover.
         | 
         | Unfortunately, I was the only one in my family who understood
         | this and the rest were too afraid to get the test done even
         | though people in my family have died of this disease.
         | 
         | A few years ago I tried to get my full genome from nebula but
         | they messed up my order really badly and it took over a year to
         | get my money back. But it looks like they might be cleaning up
         | their act and the $250 price is really tempting.
         | 
         | Since our disorder is polygenic, there's still a lot of
         | questions I have so I'm probably going to get a nebula run as
         | well.
        
         | romainsimon wrote:
         | I did the same thing. Have you found any software to analyze
         | it?
        
           | etdr wrote:
           | It's all command line tools, one is called samtools and
           | another is called picard, there might be another one I'm
           | forgetting.
           | 
           | The interesting this with the data is that it isn't your raw
           | genome, it's the entire data from all the sequencing runs of
           | 30 or whatever base pairs (I got my scan done at the 30x
           | level which is supposed to mean that on average every base
           | pair is read 30 times). So it's not like you can just read
           | your DNA directly in one string (not sure why I want to do
           | that but I like the idea of a single file containing just all
           | my nucleotides in sequence). The next step for me, when I go
           | back to it, is to get on the forums for those above tools and
           | ask how to do the things I want, there are a LOT of
           | subcommands.
        
             | Metacelsus wrote:
             | BWA and plink are other tools you're forgetting.
        
             | boldlybold wrote:
             | Welcome to the wonderful and confusing world of
             | bioinformatics!
        
           | anonymouskimmer wrote:
           | IGV is very nice for viewing sequence data. I've never loaded
           | anything into it that wasn't already prepared to be loaded
           | into it, but this is probably fairly easy to do. It's really
           | nice for viewing three-frame translation to look at the
           | proteins encoded by DNA, but for eukaryotes you have to pay
           | attention to mRNA splicing even if you know the boundaries of
           | the protein coding sequences.
           | 
           | https://igv.org/doc/desktop/#UserGuide/reference_genome/
           | 
           | Edit: Since you use Nebula's service, have you emailed them
           | to ask what they recommend for genome viewing and analysis?
        
       | sjaak wrote:
       | 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?
        
         | NickM wrote:
         | 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.
        
       | DevX101 wrote:
       | 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.
        
         | Nuzzerino wrote:
         | I'm pretty sure he has been involved. A friend of mine started
         | a company where Church was an advisor, said he was a huge help.
         | The same friend also was the one who recommended Nebula to me,
         | and I was happy with the service.
        
       | bnjemian wrote:
       | 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 wrote:
         | AFAIK they do no longer rely on BGI for sequencing, but set-up
         | their own facilities.
        
       | PedroBatista wrote:
       | Yeah, another round of these "anonymous" services.
       | 
       | It's better than having your name slapped into it, but let's be
       | honest here unless you have all your material and tools inside
       | your home with no Internet connection, all these things are NOT
       | anonymous by definition.
       | 
       | Case in point: 23andMe
        
       | minsight wrote:
       | They insist that they have a genome sequencing company but when I
       | attempted to use them it became apparent that any success happens
       | despite their equipment and processes, rather than because of it.
       | Months of waiting led to admonitions that no valid samples could
       | be found, which then precipitated further waiting for test kits
       | to be re-sent and new tests to be run. Although they eventually
       | refunded my fee (after about a year in total of waiting), that
       | only happened despite their customer service. I was left with the
       | impression that they were selling something that sometimes might
       | work but hoping that you'd be willing to hang around for months
       | or years until you win the lottery and their process actually
       | generates genomic data. Avoid.
        
       | kennywinker wrote:
       | Great! Now I can sequence the dna of women I'm creepily
       | interested in, coworkers, bosses, and any celebrities i can
       | manage to get a sample from by pouring thru their trash at 2am.
       | Thanks, Nebula!
        
         | figglestar wrote:
         | If another poster's story is true, you could have done that
         | before with 23andMe by just paying cash.
        
       | wslh wrote:
       | I was curious about this I think we can offer more sophisticated
       | (but more computing intensive) anonymity using homomorphic
       | encryption. For example, using RISC Zero [1].
       | 
       | [1] https://www.risczero.com/
        
       | kapilkaisare wrote:
       | How does this hold up against Sequencing.com [0][1]?
       | 
       | [0]: https://sequencing.com/ [1]: https://sequencing.com/our-
       | difference/privacy-forever
        
       | Ringz wrote:
       | They are not the first to offer this. Maybe in the US but you can
       | do this easily with minimal effort in Germany. And I think they
       | don't have that much time till it will be ,,mainstream ,, for
       | every patient.
       | 
       | Genome sequencing has become so cheap in recent years (and will
       | be much cheaper in the next few years) that everyone who wants it
       | will simply get it. Against the background of personalized
       | medicine, this is also very useful. (My background: CEO of a
       | company for personalized cancer therapy through WGS)
       | 
       | https://www.bundesgesundheitsministerium.de/en/en/internatio...
        
       | jsenn wrote:
       | I wonder if there's a way to physically encrypt the DNA before
       | sending it off for sequencing--e.g. randomly permute the base
       | pairs, send jumbled DNA to sequencing company, get digital
       | results back, then decrypt them. Of course generating the
       | physical "private key" and then turning it into something usable
       | to decrypt the results would have to be much simpler/cheaper than
       | the sequencing itself, otherwise you're back at square one...
        
         | anonymouskimmer wrote:
         | I think the major issues with this approach are:
         | 
         | 1) You aren't sending them naked DNA which can be modified in a
         | test tube, you're sending them epithelial cells that they
         | extract the DNA from.
         | 
         | 2) Any changes you make would mostly not be complete, and
         | they're generating your reference genome from a consensus (to
         | account for sequencing errors and DNA damage). This increases
         | the odds that any randomization you do is basically swamped by
         | the consensus algorithm. If the changes are not swamped then
         | your decryption depends on knowing exactly which changes are
         | from your encryption algorithm, and exactly which are from
         | their consensus algorithm.
         | 
         | 3) Bisulfite conversion, methyltransferases, general
         | deamination, and the like make _known_ changes to your genome
         | that can easily be fully accounted for during analysis. There
         | 's no easily done "random" cryptographic technology that you
         | can do on your DNA. And even if there was, it probably wouldn't
         | be doable without already knowing your specific sequence.
        
       | renewiltord wrote:
       | IMHO this stuff is not necessary. My DNA and that of my wife will
       | be public. The rest of my family will volunteer theirs soon. And
       | I am looking to expand the amount of public DNA from my ethnic
       | group.
       | 
       | Given sufficient time, this information will be useful for the
       | progress of science.
       | 
       | In some sense, this is part of a genetic adaptive mechanism. With
       | a sufficiently tight-band public genetic release with full health
       | history, it is possible that future science will bias to my
       | genes.
       | 
       | Perhaps some of mine will be ones people desire and others not.
       | But they will optimize to the ones that are studied. That means
       | my genes will live on slightly preferentially.
       | 
       | Which, of course, means that I should encourage everyone else to
       | keep theirs private.
       | 
       | Amusing thought. But I think we will all be for the better with
       | our genomes public. It's okay if others won't submit theirs. We
       | will submit ours and may humanity benefit from it.
        
       | Dig1t wrote:
       | This is amazing. I will actually pay for this.
       | 
       | Also cool to note that this service sequences your entire genome
       | and lets you download the raw data. Which is not something 23 and
       | Me offers.
       | 
       | You can open the data in an open source genome browser and read
       | the raw information that encodes you. Which I just think is the
       | coolest
        
       | rsync wrote:
       | 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...
        
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