[HN Gopher] 23andMe's Fall
___________________________________________________________________
23andMe's Fall
Author : AdamN
Score : 272 points
Date : 2024-01-31 11:36 UTC (11 hours ago)
(HTM) web link (www.wsj.com)
(TXT) w3m dump (www.wsj.com)
| Geekette wrote:
| Non-paywall link: https://archive.is/yqxZa
| htrp wrote:
| > Roelof Botha, a 23andMe board member and partner at Sequoia
| Capital, said the company's big-spending strategy made sense when
| money was cheap. Now that it isn't, "we've had to trim and focus
| on a smaller number of projects."
|
| > Sequoia, which invested $145 million in 23andMe, still holds
| all its shares, he said. Today they are worth $18 million.
|
| Interesting that they weren't forced to liquidate/distribute the
| shares to their LPs
| crotchfire wrote:
| That would impede their plan to sell 23andMe, including its DNA
| database, to China (or Russia, or Antarctica, or the next
| Martians that happen along).
| tokai wrote:
| Why would russia or aliens ever pay for it, when they can
| just steal it?
| jeffreygoesto wrote:
| Right. And they have enough of DNA themselves!
| crotchfire wrote:
| Dude the Martians need _human_ DNA.
| nso wrote:
| The aliens collection method is not as appealing to the
| end user, tho.
| atonse wrote:
| Maybe they are compelled to pay for it by an intergalactic
| ethics code created by the Apache foundation.
|
| I smell a conspiracy theory.
| rchaud wrote:
| When there are perfectly good intelligence agencies to sell
| to at home? /s
| crotchfire wrote:
| Oh they've already sold it to those folks.
| astrange wrote:
| The problem with all these conspiracy theories about selling
| your DNA results is
|
| 1. your DNA results are not interesting to anyone even if
| they're evil.
|
| 2. if someone wanted your DNA in particular, they just need a
| bit of your hair, so there is already absolutely nothing you
| could do to stop them.
| H8crilA wrote:
| I don't know what specific deals they have with LPs, but why
| would it make a priori sense to force the fund to liquidate
| some specific shares and distribute the proceeds?
|
| I would imagine that any fund is allowed to make losses on
| specific investments, least of all a hyper-aggressive VC fund
| which will create losses on many (most) positions, by design.
| And then once losses happen they should be treated for what
| they are - just another position where decisions should be made
| based on the outlook, and not based on the history.
| prakhar897 wrote:
| It could've been liquidated and reinvested into a continuation
| fund.
| romanzubenko wrote:
| in 2021 Sequoia switched their strategy to hold on to stock of
| their portfolio companies for few more years after IPO.
|
| "Sequoia is abandoning the 10-year venture fund, in which
| limited partners, the outside investors that contribute to the
| fund, expect to get paid back over a decade. The firm said it's
| establishing a single fund, the Sequoia Fund, that will raise
| money from LPs and then funnel that capital down to a series of
| smaller funds that invest by stage.
|
| Proceeds from those funds will feed back into the Sequoia Fund.
| With no time horizon, Sequoia can hold public stock for longer
| stretches, rather than distributing those shares to LPs.
| Investors who want liquidity can pull money out instead of
| waiting for distributions."
|
| https://www.cnbc.com/2021/10/26/sequoia-changes-fund-structu...
| htrp wrote:
| Ah permanent capital vehicles... forgot Sequoia did this too
| egberts1 wrote:
| First of many mistakes that 23andMe took: fired the co-founder.
| htrp wrote:
| 1 of the co-founders had access to an unlimited pool of
| personal capital (at least until personal issues curtailed
| that).
|
| The other had an idea.
|
| Make sure you are the co-founder with the sustainable advantage
| atemerev wrote:
| Yeah, yeah, make sure you are born into a rich family and a
| right zip code.
| htrp wrote:
| That too....
|
| but more of an object lesson that as the needs of the
| company change, the board/your co-founders will constantly
| re-evaluate whether you are still adding value.
| incomingpain wrote:
| I had not heard they went IPO. They are a penny stock now?
|
| Looking at those financials... yikes. I am kind of shocked how
| poorly they are doing.
| pkphilip wrote:
| What happens when the company goes down? they will still have
| the DNA databases
| kibwen wrote:
| Correction: the highest bidder will have the DNA databases.
| atemerev wrote:
| Qatari government is always happy to help.
| rchaud wrote:
| How about the "Russian-born billionnaire" neighbour?
| Seems like he put in a pretty penny as well.
| incomingpain wrote:
| there's no guarantee they will go under. They have low debt
| and while unprofitable and a relatively reducing number of
| potential customers.
|
| Their huge problem is hackers. All the latest news is how
| hackers have grabbed up those databases.
|
| What's likely to happen, they'll self restructure, get to
| profitability, start a stock buyback program. But IF and
| WHEN?
| rchaud wrote:
| No company that had to go public via SPAC is going to
| bother with all that. The whole point is to pump and dump.
| This company will be folded into some drug company for its
| "IP".
| nirvael wrote:
| Seems like 23andMe is two businesses: consumer and a B2B data
| business.
|
| The consumer side is clearly struggling because of the problems
| mentioned in the article (they only need one test in their life,
| public perception is bad because their security has had
| breaches). So this needs a pivot where you can change the
| public's perception from a one-time test to continuous health
| monitoring through blood markers or something similar, expand to
| tests other than genetic and make it a repeatable, accurate test
| that gives you more information (and obviously stop leaking
| people's data).
|
| But why not focus on the B2B side? Sell access to their
| databases. I'm sure computational biology and/or pharma companies
| need this information. It makes sense to do vertical integration
| by manufacturing your own drugs, but not for a cash-strapped
| business that has little incoming revenue to sustain further
| development. Presumably they are selling their genetic data, but
| I don't get why it's not giving them a revenue stream. Let GSK
| manufacture the drugs using your genetic info, with a profit
| share for any drugs made this way. They mention a collaboration
| with GSK in the article, but why was this stopped?
| logifail wrote:
| > needs a pivot where you can change the public's perception
| from a one-time test to continuous health monitoring through
| blood markers or something similar, expand to tests other than
| genetic and make it a repeatable, accurate test that gives you
| more information (and obviously stop leaking people's data).
|
| "Stop leaking data"? Sounds like a step forward.
|
| > But why not focus on the B2B side? Sell access to their
| databases.
|
| So, it's actually: try to sell your customers' data instead of
| leaking it? :O
|
| Sorry if that sounds snarky, but are we sure there are enough
| customers who want to pay to give their data to a company so
| that company can immediately sell their data on to other
| companies?
| pinkgolem wrote:
| i mean, customers are angry if personal data leaks, but a lot
| of legit usecases can be done with agregate data.
| nirvael wrote:
| That's the conflict at the heart of the business. But do the
| public care enough about that? Obviously a HN audience does,
| but people use Google and Facebook products every day with
| the awareness that all that data is sold directly to
| advertisers. With the right messaging ("yes, we sell your
| data, but it's to drug companies to help make drugs that can
| cure your illnesses") it's possible that the conflict isnt
| too much of an issue.
| rchaud wrote:
| Drug companies pay pretty well for clinical trials, so why
| would anyone pay 23andme for their own data, so that
| 23andme can turn around and sell it to drug companies?
| nirvael wrote:
| These are different scenarios, clinical trials are
| experiments not just genetic information gathering.
| michaelt wrote:
| _> But why not focus on the B2B side? Sell access to their
| databases. I 'm sure computational biology and/or pharma
| companies need this information._
|
| Are you sure?
|
| I mean, presumably there are different types of DNA testing.
| Doesn't 23andme run basically the cheapest test they can get
| away with? A user can't tell if the test measured 16 bytes or
| 1.6 gigabytes of genetic information, and if I was trying to
| launch a consumer DNA geneology service, I'd want to get
| network effects, so I'd want a test that was very easily
| affordable.
|
| Who says their records are thorough enough to be valuable to
| drug companies?
| nirvael wrote:
| You make a good point. It's possible it's not useful to them
| and that's why they can't generate enough revenue from it. I
| assume the sales pitch to pharma is that it's a wide
| database, rather than deep.
| dabber wrote:
| > Doesn't 23andme run basically the cheapest test they can
| get away with?
|
| No. That's part of why they're test is so expensive and their
| financials are so lackluster. They are apparently using a
| customized version of the lllumina's Global Screening Array
| according to their website and several other sources that
| show up in search results. That's a legit research quality
| genotyping platform from a world leading laboratory in the
| genetics space. This post from 2020 has a decent high level
| overview about it in the context of 23&me [0] though it might
| be slightly outdated by now and I've never heard of the
| company (xcode?) that wrote it (nor did I bother to look at
| what their product is.)
|
| > If I was trying to launch a consumer DNA geneology service,
| I'd want to get network effects, so I'd want a test that was
| very easily affordable.
|
| That's a pretty neive perspective. It ignores the value
| propositions of 23&me's product, economies of scale in the
| direct to consumer genetic testing space which were in large
| part enabled by 23&me's success, and all of the thorny bits
| related to questions about accuracy when presenting results.
| Not to mention that 23&me certainly capitalized on the
| network effect (which is being criticized a fair amount in
| this thread.)
|
| > Who says their records are thorough enough to be valuable
| to drug companies?
|
| GSK. See my other comment in this thread [1]
|
| [0] https://www.xcode.life/23andme/23andme-v5-chip-dna-raw-
| data-...
|
| [1] https://news.ycombinator.com/item?id=39202583#39204621
| dabber wrote:
| > Presumably they are selling their genetic data, but I don't
| get why it's not giving them a revenue stream. Let GSK
| manufacture the drugs using your genetic info, with a profit
| share for any drugs made this way. They mention a collaboration
| with GSK in the article, but why was this stopped?
|
| In 2018 GSK made a $300M equity investment in 23andMe as part
| of a 4 year collaboration (with the option to extend for a
| fifth year) under which GSK had exclusive access to their data
| for use in drug target discovery programs, but [0]:
|
| > All activities within the collaboration will initially be co-
| funded (50%/50%), with either company having certain rights to
| reduce its funding share for any collaboration programme.
|
| So it seems they not only lost out on 5 years of developing
| their B2B business, but committed to covering a portion of the
| R&D costs over that period as well. There were terms about
| profit sharing on new developments, so it was a bet.
|
| It doesn't sound like it worked out quite as well as either
| sided hoped though because in October 2023 (after the 5 year
| agreement) they entered into another agreement but this time
| [1]:
|
| > Under an amendment to their Collaboration Agreement, 23andMe
| will receive a $20 million upfront payment for a one year, non-
| exclusive data license. > [...] > for a 12-month period, and
| [23andMe will] offer its research services for analyses of the
| data over that same period. Any new drug discovery programs
| that GSK chooses to initiate during the agreement will be owned
| and advanced solely by GSK.
|
| [0]: https://www.gsk.com/en-gb/media/press-releases/gsk-
| and-23and...
|
| [1]: https://investors.23andme.com/news-releases/news-release-
| det...
| ibern wrote:
| The real value they tried to build was in pharma, which is much
| more lucrative than either of those. Their data is somewhat
| interesting but limited by the lack of rich phenotypic/clincial
| information paired with the genetics.
| helsinkiandrew wrote:
| > She's sticking to her goal to transform 23andMe from a supplier
| of basic ancestry and health data into a comprehensive healthcare
| company that develops drugs, offers medical care and sells
| subscription health reports.
|
| The company hasn't the funds (or time) to develop drugs and I'm
| not sure why any investors would invest in them rather than a
| company with a track record of doing so or a potential drug.
|
| Selling their customers data to other companies (or partnering
| with) that can create drugs from it would seem the logical
| choice, along with "subscription health reports" and anything
| tacked onto the DNA/blood profiling/testing product to keep the
| data coming in.
| ackbar03 wrote:
| I would have thought they were pretty well positioned to find
| new targets for currently untreatable diseases. But maybe they
| don't quite have the capacity needed to target specific
| diseases and/or data not granular and clean enough, or not
| enough capital/runway suitable for that kind of stuff. If they
| had the sequences for people with diseases such as
| alzeimers/Parkinson, they could just look for common mutations
| and see what specifically it affects
| PaulHoule wrote:
| It is not like they are doing real genomics. It's devilishly
| hard to find genes responsible for conditions like
| schizophrenia, heart disease, asthma, diabetes, etc. The last
| thing you need is mountains of low quality data.
|
| Attempting to discover drugs is a proven way to make a small
| fortune by starting with a large fortune. Everything north of
| the Charles River in Boston would vanish if people stopped
| believing though.
| singularity2001 wrote:
| mountains of low quality data is often enough for deep
| learning
| icegreentea2 wrote:
| I don't think 23andme's strongest asset point would be in
| direct drug discovery, but rather in helping target sub-
| populations for clinical trials. The SNP data that 23andme
| has is relatively low quality compared to proper
| sequencing, but (combined with their survey data) is
| probably at least as good, or better information available
| for typical clinical trial planning or screening.
| logifail wrote:
| > I don't think 23andme's strongest asset point would be
| in direct drug discovery, but rather in helping target
| sub-populations for clinical trials
|
| Was there an issue with targeting sub-populations for
| clinical trials beforehand?
|
| At an ELI5 level, if you're hoping your drug candidate
| will help cure disease X, you sign up patients with
| disease X to join your clinical trial. That's not the
| hard part!
|
| (source: family member works at $bigPharma)
| icegreentea2 wrote:
| The two (related) cases where you'd perhaps want genetic
| information is:
|
| a) If you suspect there is a significant pharmacogenetics
| component to what you are studying (or related to disease
| progression).
|
| b) You're working on something preventative.
|
| From a previous job I worked at (we made PCR tests),
| there was interest on screening for APOE genotypes to
| enrich an Alzheimer's drug trial - drug maker believed
| that APOE genotype would have a significant impact on
| drug performance.
|
| But you're absolutely right that you can often (usually?)
| do 'enough' enriching without genetic information.
| ackbar03 wrote:
| My understanding is, ideally your clinical trial manages
| to capture or balance out the different potential factors
| in genetic variation.
|
| An example of this is when they tested the covid vaccine,
| they wanted to make sure they had enough participation
| from African American and other ethnicities since these
| were usually under represented in clinical trials
| relative to the population, and there are sometimes
| subtle variations in the way peoples body respond to
| drugs depending on their race.
| Waterluvian wrote:
| I think they're about as well-positioned as some guy with an
| idea for an app.
| helsinkiandrew wrote:
| > I would have thought they were pretty well positioned to
| find new targets for currently untreatable diseases
|
| To find new targets yes but to develop a drug to market (and
| revenue/profit) takes 10-15 years. Even a drug to a state
| that gets approved for human testing seems beyond what they
| could do themselves without so much funding it would wipe out
| the existing shareholders. Selling to/Partnering with other
| drug companies with targets they've discovered/IP from DNA
| etc would seem more realistic.
| toomuchtodo wrote:
| https://investors.23andme.com/news-releases/news-release-
| det...
| ackbar03 wrote:
| I would say target discovery is definitely no less
| important than drug discovery though. Biology is so
| complex, for a lot of diseases we aren't even sure the
| targets and pathways are valid. But then again, as per
| another commenter, I guess it's much harder than it seems,
| and probably not as easy to monetize as a drug
| bombcar wrote:
| That goal sounds like a goal you have to raise funds, not a
| goal you have to actually _do_ the thing.
|
| Perhaps ok for a startup, not ok for a many years old
| established company.
| iancmceachern wrote:
| It would be far smarter for them to try to sell the data to
| drug companies.
|
| In the words of Boromir: "One does not just become a drug
| company."
| logifail wrote:
| > It would be far smarter for them to try to sell the data to
| drug companies.
|
| Haven't they already been trying this ... for years?
|
| (Way back in 2018): "GSK and 23andMe sign agreement to
| leverage genetic insights for the development of novel
| medicines"
|
| https://www.gsk.com/en-gb/media/press-releases/gsk-
| and-23and...
| iancmceachern wrote:
| I wonder why that didn't work out for them...
| logifail wrote:
| Perhaps, to again (mis)quote Boromir: "One does not
| simply leverage genetic insights"
| mnky9800n wrote:
| A company that has never made any money is now worth nothing.
| Maybe the world is starting to make sense again?
| bArray wrote:
| Trust me, it's not. I've seen start-ups worth 100x than a
| smaller successful business due to speculation, despite the
| smaller business employing more people and actually turning
| profit for many years.
| mplscarnut wrote:
| There's plenty of successful businesses chugging along
| growing at about the rate of inflation. It's really hard to
| grow a business at 10 or 500 times that rate.
|
| Why would it be surprising to value the latter kind of
| business higher than the former?
| brianwawok wrote:
| Growing at the rate of inflation only matters if your
| market is capped out. Like, say Soda makers.
|
| If you either create a brand new market, or are taking on a
| drastically undeserved market... you absolutely need to be
| growing faster than inflation. Or your brand new company
| would be worth $1 the first year, $1.03 the second year..
| mplscarnut wrote:
| Yeah I was trying to convey there are successful
| businesses that are broadly maintaining and there are
| rocketships (and everything in between) and we should
| expect them to be valued differently and have different
| risk profiles. So the observation (100x! That's dumb!) is
| not rational.
| layer8 wrote:
| What use is that growth in terms of valuation if the
| company never manages to break even?
| YetAnotherNick wrote:
| VC logic is that 5% of the companies they invest in
| returns 100x their investment in those. So even if 95% of
| the companies never manages to break even they are still
| profitable.
| bart_spoon wrote:
| VC logic is that a company does not need to be profitable
| for a VC's investment to be profitable. Simply getting
| the company to an expensive IPO is all that is required
| for VCs to make money. And that is possible even if the
| company has never made a dime.
| bombcar wrote:
| Remember that startup "valuations" are not what they're
| "worth" - it's simply how small of a segment they have been
| able to convince the last round to take. The valuations have
| a bunch of unknowns that can wildly swing it.
|
| The small business is successful and so the calculus as to
| what it is worth is much more explicit.
|
| The extreme example of this is commercial real estate with a
| long-term tenant (think: the person who owns the land a post
| office is sitting on). Everything is known (lease length,
| amounts, current interest rates, etc, etc) that the
| value/sale price is a simple formula.
| samsk wrote:
| Omg, how can a company doing genetic test burn $1.4b ? Altought
| better question might be, how could it be worth $6b ? :-)
| rubyfan wrote:
| "celebrity spit parties"
| rchaud wrote:
| Richard Branson, Oprah, SNL, billionnaire neighbour investor,
| Google founder, celebrity parties, branded Barbie dolls and
| SPAC IPOs can take you a long way .
| resters wrote:
| Oddly, 23andme adopted an extremely cautious, risk-averse
| strategy with respect to providing "health information". The
| result of this is that many other services became a more
| interesting/entertaining source of personalized health
| information based on genetic data (often 23andme raw data
| extracted and fed into the other system).
|
| I get new updated health information from 23andme perhaps 2 times
| per year. It's mind boggling to imagine that with all the
| research being done that is all that makes the cut as interesting
| and trsutworthy enough for 23andme to tell me about it.
|
| In other words, a majorly failed content strategy based on fear
| of being shut down for providing insufficiently vetted health
| info.
|
| Meanwhile, someone created multiple accounts and the ancestry
| results didn't match even when collected from the same person.
| numbsafari wrote:
| I'm confused... you want more health recommendations from a
| service whose most basic scientific offering you also consider
| junk?
|
| I have some pills for you. Just for you, mind you. Special
| made. Sign up for this subscription and we'll send you a new
| supply each day...
| resters wrote:
| No, but I would prefer greater transparency about the
| accuracy of the analysis and also greater transparency about
| the reliability (or unreliability) of any health
| recommendations based on research.
|
| I'm not looking for a single source of authority and I will
| not be disappointed if an updated "chip" or study reverses a
| previous recommendation/insight.
|
| 23andme had a blog post about the MTHFR gene and why they
| don't include it. I'm not there to read the blog I want to
| know interesting things about my own genetics, even if what
| is interesting is that they don't think it matters! This is
| just bad content strategy even if it's justifiable from a
| "healthcare" perspective.
|
| Why so much worry about a customer getting the wrong
| impression from one of the health reports? Seems a bit
| absurd. How much money did it cost to put in place all the
| warnings about the potentially upsetting impact of various
| mutations.
|
| I wish that 23andme had focused on being an entertaining way
| for people to discover more interesting stuff about
| themselves, rather than a rarefied place where only the most
| well-vetted research is acknowledged to exist.
| ErikBjare wrote:
| The FDA provided ample threats regarding their health claims.
| No wonder this is how it ended up.
| rchaud wrote:
| This story makes 23andme sound like a non-fraud version of
| Theranos, with some of the same issues around business viability,
| dodging the FDA, relentless PR and funding from rich friends.
|
| If a healthcare startup get shout-outs from Oprah, SNL and
| branded Barbie dolls, is that a bad sign?
| padjo wrote:
| If Theranos devices had been able to do what they claimed the
| business model was clear and likely very profitable.
|
| I don't understand how anyone ever thought 23andMe had a viable
| business model selling a test that only needed to be done
| once(and apparently selling it at a loss to boot)
| rchaud wrote:
| The "if" was the entire scam though. They hired many smart
| people, and every one of them said that the proposed design
| was physically impossible to build.
|
| There's a reason that these complex undertakings are made by
| boring conglomerate companies that have decades of experience
| in the industry, produce many different products in that
| sector, and whose CEOS don't try to get on the covers of
| magazines.
| FireBeyond wrote:
| Precisely. Yes, breakthroughs get made by smaller companies
| and "outsiders" every so often, but the thing is, to these
| testing companies - there's billions in profit and improved
| logistics by figuring out "nano" collection. It wasn't that
| they weren't interested. They've tried, for decades. But in
| the end, biology and physics are winning out.
| gsky wrote:
| Forbes listing is a big red signal
| pyrrhotech wrote:
| Apparently $356M is nearly $0 to the WSJ
| dabber wrote:
| > Apparently $356M is nearly $0 to the WSJ
|
| That is a pretty awful click-bait title. Presumably the "$0" is
| in reference to their sub $1 share price?
|
| The fact that they put everything behind a paywall _and_ slap
| on click-bait titles is confusing to me. I can't imagine paying
| for access to that type of writing.
| gumby wrote:
| This is a classic combination of cargo-cult matching with ZIRP
| regime.
|
| 23andMe never had a business plan, but it didn't matter because
| their investors figured they had the connections to make it work
| (look at the explanation of how they booted out the other
| founder). Their Libertarian/lazy attitude towards regulation is
| just an example of how couldn't be bothered to even do the
| necessary homework. Their attitude towards their data breach is
| another.
|
| Makes me wonder how good their science is. I don't know anyone on
| that side of their business, but comments from friends who used
| to work their about how _their_ parts worked are not encouraging.
| Shank wrote:
| > To create a recurring revenue stream from the tests, Wojcicki
| has pivoted to subscriptions. As media companies launched
| streaming "+" channels, Wojcicki rolled out 23andMe+, offering
| personalized health reports, lifestyle advice and unspecified
| "new reports and features as discoveries are made" for an initial
| $229, with annual renewals of $69.
|
| I was a heavy believer of 23andMe until this point. I answered
| _all_ of the available research questions, which was a thing that
| took absolutely hours and was filled with semi-invasive medical
| questions. I did this under the premise that I would hopefully be
| helping research and I felt really rewarded having completed all
| of them. Then, they dropped the + bombshell and I felt really
| rugpulled. I paid them for genotyping on their v4 and v5
| platforms -- so I paid twice, I referred friends, I bought people
| kits, I helped research...and now I was being asked to pay a
| subscription for what I was promised to begin with? Eesh.
|
| I think the fundamental issue is that when the FDA stepped in and
| told 23andMe to cut back on their reporting that they really hit
| a roadblock. Promethease always gave better results than 23andMe,
| but when that happened it commoditized genotyping fully. Just
| download your data from _any_ provider and use a third-party tool
| and you 're set.
|
| Fast forward to 2024 and they're stuck with a platform that's
| semi-limited and they haven't delivered on any of the research
| deliverables that many people wanted in the first place. The idea
| of getting new genetic reports monthly was appealing and simply
| never materialized. It's no surprise people aren't hot on this as
| a business -- but what is surprising is that they were completely
| passed by startups like Nebula Genomics in offering whole-genome
| sequencing and competitive data access. I think the stored data
| they have is their only advantage, but they don't seem to know
| how to leverage it.
| hasoleju wrote:
| > think the stored data they have is their only advantage, but
| they don't seem to know how to leverage it.
|
| I really wonder what happens to that data if they get acquired
| or shut down. The possible new owner of the data might have a
| completely different business case in mind. This scenario is
| something you usually don't consider when you give your data to
| a company that you trust at the moment.
| babypuncher wrote:
| Like selling it to insurance companies who can use the data
| to deny coverage.
| mminer237 wrote:
| This is illegal, at least in the US.
| carbocation wrote:
| Illegal for health insurance companies. But not so for
| life insurance, or disability insurance or long-term
| care.
| rockinghigh wrote:
| It's illegal in some US states like California. The
| California Genetic Information Privacy Act prohibits
| these companies from disclosing a consumer's genetic data
| to any entity that is responsible for administering or
| making decisions regarding health insurance, life
| insurance, long-term care insurance, disability
| insurance.
| astura wrote:
| If they wanted to use that information for underwriting
| they'd just make getting a genetic test a prereq before
| underwriting the policy.
| Dylan16807 wrote:
| And if they wanted easy cash they'd "just" make you pay
| $500 as a signup fee.
|
| Which is to say: No they wouldn't just do that, it would
| cut their business too much despite being a way to make
| more money per client.
|
| But getting it from a company that already has it avoids
| that downside.
| sorokod wrote:
| No need to wonder, imagine the worst case scenario and assign
| it a non zero probability.
|
| _This scenario is something you usually don 't consider when
| you give your data to a company that you trust at the
| moment._
|
| Why would you not consider it?
| shmatt wrote:
| Promethease is why i initially did 23andme, and it was beyond
| worth it for me personally.
|
| But for the same reason I'm just a one time customer, all I
| needed was for 23andme to give me a very expensive hospital
| test at a 95% discount, and I didn't need them anumore
| yeahwhatever10 wrote:
| Can you explain how you got a 95% discount?
| rockinghigh wrote:
| They are comparing with a full DNA sequencing when going
| through a hospital.
| shellfishgene wrote:
| Is there a Promethease equivalent for ancestry data?
| mfld wrote:
| yTree would qualify: Small one-time fee, no subscription
| needed, simple but good results.
| beaugunderson wrote:
| there's this for example, not as open as Promethease but
| similar in that it's "bring us your data and we'll give you
| new analysis on it":
|
| https://yourdnaportal.com/advanced_ancestry_analysis
| belval wrote:
| As someone who paid for 23andme+, it was pretty much a scam
| anyway, I got maybe 4-5 more reports over the year, all of
| which were for random popular ailments like "Anxiety" where the
| link between your genes and the disease(?) are pretty dubious
| in the literature and the takeaway was "you are 5% more likely
| to experience anxiety".
| astrange wrote:
| > where the link between your genes and the disease(?) are
| pretty dubious in the literature
|
| This is inescapable; genetics usually can't show causation,
| for instance because you can't do an experiment where you
| change someone's genes.
|
| Geneticists seem to deal with this by using statistics like
| GWAS that are obviously just correlation, adding a sentence
| that correlation doesn't show causation, and then just
| proceeding and pretending like it does.
| belval wrote:
| Sure, perhaps that was a bit too succint. What I mean is
| that, as a customer of 23andme, I'd much rather know about
| some known genetic disease that I may or may not have than
| about wide-ranging things that affect everyone like stress
| and anxiety. It's just not as serious.
|
| 23andme went with the "only give very limited information"
| which I respect but is ultimately pretty much useless
| compared to just running your data against dbSNP and
| telling me that I have this or that marker for this or that
| disease backed by this or that paper.
| Dylan16807 wrote:
| Only showing correlation is one thing, but if the
| _correlations themselves_ are barely noticable then that 's
| a big problem for making a useful report.
|
| Though if you find whatever gene is most correlated with
| something, what are the options for it _not_ to be
| causation? If the chance of causation is high enough, it
| makes sense to proceed as if the risk is real.
| astrange wrote:
| When I said correlation isn't causation I meant it.
| Neither high nor low correlation is evidence for
| causation.
|
| There's a more advanced form of being bad at this where
| you think you can show causation by controlling for
| everything in the environment. This is also wrong; it
| produces something called collider bias.
|
| > Though if you find whatever gene is most correlated
| with something, what are the options for it not to be
| causation?
|
| 1. It's a coincidence and it's never causal.
|
| Imagine an OSS project releases a bugfix and you diff the
| old and new versions. (This is basically GWAS.)
|
| The bugfix part of the diff caused it to be fixed. The
| updates to the copyright dates or changelogs didn't.
|
| 2. It's causal, but the causal chain involves a specific
| environmental factor, and we should change that instead.
|
| For instance, you can say every human has a genetic
| disease that prevents them from producing their own
| vitamin C, which most other mammals can do. But instead
| of calling scurvy a genetic disease we just eat fruits
| and vegetables.
| Dylan16807 wrote:
| > 1. It's a coincidence and it's never causal.
|
| Half the point of analyzing statistics is to filter out
| coincidences, and that applies to correlations too. If
| something is a coincidence, it won't hold up as a proper
| correlation under reasonable amounts of analysis. So when
| the premise is we're _starting with_ correlations, I
| think it 's alright to assume they're mostly not
| coincidences.
|
| > The bugfix part of the diff caused it to be fixed. The
| updates to the copyright dates or changelogs didn't.
|
| In that case the bugfix is the "gene most correlated",
| isn't it? Give it a few generations to randomly spread,
| and the signal will be far stronger on the bugfix gene
| than on the copyright gene. (And if it hasn't been
| spreading for generations then you won't have enough
| samples to find either gene.)
|
| > 2. It's causal, but the causal chain involves a
| specific environmental factor, and we should change that
| instead.
|
| > For instance, you can say every human has a genetic
| disease that prevents them from producing their own
| vitamin C, which most other mammals can do. But instead
| of calling scurvy a genetic disease we just eat fruits
| and vegetables.
|
| If you're testing just humans, you'll get a 0%
| correlation because everyone has that gene.
|
| If you're testing across mammals, then "WARNING: Prone to
| scurvy". Which is a completely correct and causal result
| about a genetic problem, with easily accessible
| treatments.
|
| So, I don't understand your example at all.
| justrealist wrote:
| Please have some awareness of how little thought you are
| putting into dismissing a field where thousands of very
| smart people are working on solving the problem you
| describe. In fact, you can correct for the exact problem
| you describe with sibling studies where people have the
| same environment but different genes.
|
| Have maybe a small ounce of humility in this respect.
| astrange wrote:
| > Please have some awareness of how little thought you
| are putting into dismissing a field where thousands of
| very smart people are working on solving the problem you
| describe.
|
| Thousands of very smart people do a lot of dumb things.
| People still work on string theory. The people working on
| proper causal inference are also smart, work hard, and
| have Nobel Prizes.
|
| https://www.nobelprize.org/prizes/economic-
| sciences/2021/pop...
|
| On the other hand, the people doing genetics who aren't
| careful about it produced the 23AndMe report which says I
| have a "17% chance of having green eyes". Against what
| counterfactual?
|
| > In fact, you can correct for the exact problem you
| describe with sibling studies where people have the same
| environment but different genes.
|
| "Correcting" is a wrong way to think about it. Generally
| speaking, overcorrection is worse than undercorrection
| because of collider bias. You need to choose a study
| design that's correct in the first place.
|
| You're describing a natural experiment, which is better
| than a GWAS of self-selected 23AndMe customers, but does
| have problems (silly one: selection bias because the
| sample only includes people with siblings) and more
| importantly is only guaranteed in the study environment
| (eg people who live in the UK in 2008) but gets reported
| without identifying what that environment is.
| ImPostingOnHN wrote:
| _> > In fact, you can correct for the exact problem you
| describe with sibling studies where people have the same
| environment but different genes._
|
| _> You need to choose a study design that 's correct in
| the first place._
|
| That's precisely what a sibling study is: a study design
| that's correct in the first place, as far as the problem
| we're discussing goes.
|
| _> You 're describing a natural experiment_
|
| That is correct: a sibling study, which corrects for the
| problem we're discussing, often contains aspects of a
| natural experiment, namely that the siblings tend to
| naturally be siblings, rather than raised together purely
| for the purpose of a study :)
| KMag wrote:
| "10% more likely to experience anxiety, once having clicked
| on this useless link"
| BasilPH wrote:
| > As an added security measure, we have temporarily disabled
| the ability to download your raw genetic data. We hope to re-
| enable this ability soon, and we appreciate your patience.
|
| Apparently 23andMe doesn't let you download the data anymore, I
| just tried. I wanted to give Promethease a go, seems
| interesting.
| sib wrote:
| Wouldn't laws in certain jurisdictions require them to allow
| you to download your data?
| suslik wrote:
| I couldn't find it either. Fortunately, I downloaded the
| genotypes in July.
| PaulHoule wrote:
| It is an embarrassment that they bought Lemonaid health, I don't
| know any other way to put it.
|
| (1) Is that being associated with a penis pill pusher is brand
| destruction. Any normal person would get this right away without
| trying but executives just can't see what their actions look like
| to their customers.
|
| (2) It's a form of achievement laundering. Lemonaid health
| failed, pure and simple. A circle jerk acquisition is alchemy
| that turns a failed business into an apparent success, now the
| founders, management and people who invested in it will get
| accolades for being successful when really the Silicon Valley
| Mafia stole from public investors to maintain its image.
|
| It ought to be a lot harder for businesses to get acquired. Maybe
| we need a vote by the customers, maybe when Google buys a company
| they should be required to spend a 1/4 of the money on ads
| warning people that the business could get shut down, etc.
| ianai wrote:
| We need a functioning congress. That requires US citizens to do
| their civic duties, peacefully. Also requires a fair bit of
| education.
|
| It would be massively helped though if the death threats were
| curbed. How Rome fell.
|
| People with money need to understand their wealth is a
| peacetime merriment. The bombs in Ukraine and Russia are
| indifferent at best about the assets they destroy. And as war
| increases in probability, stores of wealth will be imperiled.
|
| A wealthy way of life (yachts, private jets, private islands)
| is a peaceful way of life.
|
| Edit-money is a social construct with no meaningful place in
| war. Parts of Ukraine now more resemble the moon than any other
| habitable patch of the earth.
| hyperorca wrote:
| Their kit is 99 dollars, but how expensive is the actual DNA
| testing nowadays ? It's my understanding from this [0] video that
| it is approximately 1000 dollars for the whole genome, but 23&Me
| sequence only a tiny portion of the genome (above video mentions
| 500 000 bases out of 6 billion total bases of human genome), and
| that sequencer processes thousands of samples in parallel, so
| there is some economy of scale factors. It is sometimes very
| confusing how all these tech/techish companies have such bad
| financials.
|
| [0] https://youtu.be/C3T_IaIGQxo?t=141
| icegreentea2 wrote:
| Their financial reports consistently paint approximately 50%
| gross profit (revenue - cost of revenue). However, their R&D
| burn is enormous. Sales, marketing, general and admin costs are
| approximately equal to their gross profits.
|
| In an alternate reality, you probably could have structured
| 23andme into a company making modest net profit. But that would
| not have matched the 6 billion price valuation either. And it's
| quite likely that a substantial part of the R&D burn was
| because they recognized the limitations of their core product.
|
| https://investors.23andme.com/news-releases/news-release-det...
| htrp wrote:
| The problem might be that those other 6 billion bases have all
| of the signal that you need for drug discovery and rare disease
| research.
| tomaytotomato wrote:
| Silicon Valley's time is coming soon, it is going to go the same
| way as Hard Rock/Heavy Metal music scene on the Sunset Strip, LA
| in the 90s.
|
| I give it 10 years time before it turns into a town just living
| on its old glory, with tourist attractions like:
|
| - "This used to be a bar where Google's exec team drank"
|
| or
|
| - "This was the hotel Mark Zuckerberg threw an Oculus Rift into
| the pool"
|
| or
|
| - "Oracle datacentre re-enactment theme park, with real old beard
| Oracle DBA you can interact with"
|
| Reference: https://youtu.be/AUrHVWa3s2Y
| gsky wrote:
| Unless dollar looses it's reserved currency status Silicon
| valley is going to be fine
| Timber-6539 wrote:
| Silicon valley's tokenomics are going bust because of the
| Fed's tightening. Loosing the reserve currency status is
| another matter altogether which should scare the future of
| the American economy.
| astrange wrote:
| That wouldn't matter. "Exorbitant privilege" is a thing but
| it's not that much of a thing. Notice Argentina, which has
| the opposite of our privilege, still gets loans - there's
| no other set of countries for lenders to go to.
|
| The reason it looks like we have magic fiscal policy and
| Europe doesn't is that Europe just loves austerity and
| refuses to print money basically because they're stubborn.
| They could and should do it too.
| MrDresden wrote:
| It is interesting to me how their stated goals and planned future
| trajectory sounds like what happend to 'deCODE genetics' an
| Icelandic genetics company founded back in 1996 with a focus of
| "developing novel methods to identity, treat and prevent
| diseases"[0].
|
| They really were on the forefront at that time, and have been an
| research powerhouse ever since[1] , but struggled for some time
| to find a sustainable revenue stream for their discoveries.
| Shortly after the turn of the millenium they came out with DNA
| diagnostic kits, that were able to diagnose various things known
| or thought to increase likelihood of various illnesses and
| conditions. And this product even came onto the market before
| 23andme.
|
| But since 2012 (I think) they have been an independent research
| subsidiary of the US pharmaceutical company Amgen, where Amgen
| then can capitalize on the research output to make the drugs in
| question (and probably much more that we are not privy to).
|
| [0]: https://en.wikipedia.org/wiki/DeCODE_genetics
|
| [1]: https://www.decode.com/publications/
|
| _edit: wording and spelling_
| SebFender wrote:
| Helps when your ex is Sergey Brin. When "founding" the company
| they were married, I wonder how they got financed
| amadeuspagel wrote:
| 23andMe seems like an archaic thing to me, the sort of thing that
| a science fiction author come up with, a world of high tech
| obsessed with ancestry.
| someonehere wrote:
| I was an early adopter of 23andMe way back when they started.
| Before the privacy concerns. Before we had to worry about
| password uniqueness.
|
| I didn't renew my services with them. 1) I didn't gain any value
| out of it, 2) their consistent blame of users that used recycled
| password for their breach.
|
| I use ancestry.com as I'm working on dual citizenship with my
| family's home country and find it worth the value. I was able to
| trace my family back through the Colonial Revolution all the way
| to the 1500s in Germany. That's worth my money. Not 23andMe.
| ilamont wrote:
| This is a damning indictment of Wojcicki's management of the
| company. Failed execution on the drug development strategy over
| 10+ years, lying about growth, pushing out the cofounder, never
| making a profit, hack that went undiscovered for months ... about
| the only area she's had success is raising money and that's in
| large part thanks to being a member of the Silicon Valley elite.
|
| If she can't convince her family, friends, and connections to
| pony up more cash, the company will likely be sold as the DNA and
| profile information has real value. I worry that it will go to PE
| (like Ancestry.com) or a global data broker that will strip-mine
| the assets in every evil way you can imagine (and maybe even some
| we can't).
| progbits wrote:
| If they go bankrupt they should destroy all the data but of
| course they will rather sell it to recover at least a bit of
| money.
| kibwen wrote:
| Remember that it's good opsec to rotate your genome every six
| months.
| welfare wrote:
| That's hilarious. I'm imagining CRISPR as a tool to
| scramble your DNA every so often.
| SOVIETIC-BOSS88 wrote:
| That sounds like a terrifying cyberpunk novel that I
| would definitely read. Although I hope the future is not
| that bleak.
| idatum wrote:
| Reminder of the film Gattaca which explored some of the
| risks of leaking your DNA in a future dystopia.
| paulddraper wrote:
| Such a good movie. (If a bit slow paced.)
| SOVIETIC-BOSS88 wrote:
| Excellent movie. Did not see it when it was released
| orignally, but discovered it by chance going through the
| tv channels. A real gem.
| seanhunter wrote:
| Also you have to have a genome with at least one uppercase,
| one lowercase, one number and one special character that
| isn't \/'` or "
| ackbar03 wrote:
| Someone should do a genome manager startup
| Tuna-Fish wrote:
| If they file for bankruptcy, they cannot legally destroy the
| data. The data is a salable asset, the law requires them to
| preserve it so that it can be sold and the money returned to
| creditors. And many of the promises they have given about
| it's use can and will be broken by the trustees dissolving
| the company.
|
| The thing you need to consider when you give data to a
| company is not "will these people misuse this", but "once
| these guys go bankrupt and sell the data to the highest
| bidder, can it be misused?". See, for example, how if your
| company holds a large mailing list, it will typically be sold
| to a spam operation for a few bucks.
|
| The minimum standard for giving serious personal information,
| like your DNA, to a company needs to be that the company
| receives a limited-time license to handle the data for the
| purposes they need to provide the service, and absolutely
| nothing more.
| j-wags wrote:
| This makes me wonder if there could be strong enough laws
| around protecting genetic info (for example penalties that
| pierce the corporate veil) that those with fiduciary
| responsibility to the company could argue that destroying
| the data is really in the shareholders' best interest.
|
| I'm completely uninformed in this area. Is there precedent
| for anything like this in the modern day?
| mjevans wrote:
| Upgrade this to any medically adjacent data. ALL of the
| DNA data should be covered under HIPPA or something
| similar.
| kube-system wrote:
| Genetic information is PHI and is already covered under
| HIPAA. The problem is that, like most companies, 23andMe
| isn't a HIPAA covered entity. Because they're not a
| healthcare provider or health insurer, it doesn't apply
| to them.
|
| Genetic information is also controlled by other laws such
| as GINA. So it is already some of the most controlled
| health data there is. But that's not a very high bar in
| the US.
| txru wrote:
| My mom, dad and sister have all done 23andMe, so it doesn't
| matter if I have or not. They have an entirely complete
| genome for me.
|
| I agree with your limited license idea. It's just not ok
| that something like that can be dischargeable in
| bankruptcy. We don't have the ability to refuse consent in
| the first place, if our family provide it.
| TedDoesntTalk wrote:
| How can they link your family's DNA to you if they don't
| have a profile or account for you? How do they know you
| exist? And if they know you exist, how do they know you
| are related to that particular family without some DNA
| information about you to link to them?
| samatman wrote:
| That's a lot of information, but it is in no sense a
| complete genome. It does mean that someone who had that
| information could prove that your DNA belonged to a child
| of your mom and dad with high accuracy, or that you were
| a sibling of your sister. It also reveals that you don't
| have certain mutations, or that you do have a few.
|
| But where your parents have different SNPs, there's no
| way to derive which of them you inherited. What you said
| is a bit like saying that, because you know all of the
| cards in a deck of playing cards, you know what hand
| someone is holding, except in a counterfactual world
| where there are 10,000 possible cards and you know that a
| deck only has 52 of them.
| yardie wrote:
| > The data is a salable asset, the law requires them to
| preserve it so that it can be sold and the money returned
| to creditors.
|
| This would depend on the terms you agreed to at the time
| you signed the account and submitted your data. I'm aware a
| lot of companies like to bury marketing disclosures under a
| busload of T&Cs. But if you didn't agree having your
| marketable data allowed to be sold the sale the to
| creditors can't backdoor it in. They can only reach out to
| you to opt into new terms, which you should refuse.
| mfld wrote:
| I would expect that you have a right to get your data
| deleted.
| epistasis wrote:
| My suspicion has always been that this sort of data-common SNPs
| from all comers and no specific phenotype collection-is not
| very useful for any sort of drug design. And if it is, publicly
| available data will be just as good as 23andMe's larger amount.
|
| It was a bet worth trying, IMHO, but always a risky bet. And
| with bio, you don't find out if your bets work for a decade or
| more, because the iteration cycle is 10x slower than software
| for businesses/consumers.
| timy2shoes wrote:
| My suspicion has been that SNP array data is not that useful
| for drug discovery. They're targeting the most
| common/variable SNPs, which I suspect don't have a large
| health effect (except for maybe late in life, otherwise how
| would they get passed down). I would suspect the more
| valuable targets would be rarer, or arise de novo (as is
| common in cancer, eg driver mutations).
| carbocation wrote:
| The effect size of common SNPs is not informative about the
| effect of drugging their related genes. For example, the
| common variants near HMG-CoA reductase have very small but
| significant (confidently nonzero) effects. Yet drugging
| HMG-CoA reductase can reduce LDL cholesterol by ~40-50%
| (statins).
| nextos wrote:
| deCODE Genetics, whose history is very interesting and
| worth reading [1], was bought by Amgen based on this
| premise.
|
| Note, however, that SNPs like the one you pointed out are
| relatively infrequent. Amgen was expecting a two digit %
| improvement in their pharma pipeline by using GWAS
| insights.
|
| [1] https://en.wikipedia.org/wiki/DeCODE_genetics
| carbocation wrote:
| > Note, however, that SNPs like the one you pointed out
| are relatively infrequent.
|
| If you mean that SNPs with small effect sizes don't
| always point to useful drug targets with big druggable
| effects, that is possible, but this remains an open
| question and is the subject of intensive research right
| now.
| nextos wrote:
| Yes, I agree. The trick is probably to find cell-specific
| SNPs located in regulatory regions so that there are no
| off-target effects. Massive screens using single-cell
| perturbations will help to gain some insights.
| sjducb wrote:
| You're right that rarer SNPs have big effect sizes. However
| the problem is that they're rare so you don't make much
| money treating ppl with rare diseases.
| hoistbypetard wrote:
| I do too. That's why I've refused to use the kits I've been
| gifted... I assumed the fallback here was to build up a cache
| of data to sell.
|
| I'd be nice if they could be prevented from doing that,
| possibly by the court system.
| astrange wrote:
| Selling it is not a problem for the same reason they can't
| make a profit from it. It's not worth much.
|
| (They do have valuable data, but it's the survey answers and
| friend and family connections. Nobody really cares you have a
| G at SNP 12213244243.)
| zamadatix wrote:
| Well, nobody is really interested in the test to find out
| they have G at SNP 12213244243 either. They do it
| specifically to get the ancestry, health, and potential
| physical bias type information you mention - that's the
| only real data anyone is talking about when referencing the
| test. Plenty of companies would love to have that kind of
| data to target users with.
|
| The real killer would probably be around how useless
| healthcare regulation could make having most of that data.
| I'm not sure how far that really extends or what you manage
| to sign away by sending in your sample though.
| astrange wrote:
| That's kind of what I mean by it not being worth much
| though. Sure, leaks are embarrassing - the most common
| issue here is finding out that your dad isn't your real
| dad.
|
| But it's not useful for evil purposes because it's not
| /accurate/. It doesn't reveal all that much real
| additional information about your ancestry and health!
|
| Since it's decided before you're born:
|
| 1. its effects are mostly already expressed and people
| can know them either by looking at you or (like life
| insurance) by making you get a medical exam before buying
| their services.
|
| 2. it can get out of date for cultural reasons. Your
| biological ancestry isn't always how you behave, like if
| you're adopted. Whereas last name + zip code is a pretty
| good predictor already.
|
| But 23AndMe does have a lot of that information about
| their customers. The reason they have it is because they
| asked for it in surveys.
| digging wrote:
| > But it's not useful for evil purposes because it's not
| /accurate/. It doesn't reveal all that much real
| additional information about your ancestry and health!
|
| I'm not actually convinced that accuracy is all that
| important to the value of personal data. Or perhaps I
| should say I don't think think there's an accuracy floor
| at which the value drops to $0.
| ikekkdcjkfke wrote:
| Not in the field, but i would assume the data is combined
| to create profiles to be used to infer data about other
| people with similar data, so now they have dna into the
| profiling mix. And in combined I mean the rest of your
| digital footprint from other sources, not a survey on 23
| nradov wrote:
| The health data is pretty underwhelming for most people,
| outside of a few highly studied genes like BRCA variants.
| I did a genetic test and it reported that according to
| one study I had something like a 3% risk of a shoulder
| injury which is higher than the population average of 2%.
| So what am I supposed to do with that information, wear
| shoulder pads or something?
| codeflo wrote:
| No, but in theory, an insurance company could use this to
| calculate your risks differently. Even a 1% signal isn't
| worthless.
| nradov wrote:
| Due to GINA, medical insurance companies aren't allowed
| to use that data for setting rates or denying coverage so
| it's useless to them. In theory life insurance companies
| could use it, but at the scale they operate it's not
| worth the cost.
| mcherm wrote:
| Isn't there significant value in the medical information,
| deciding who to offer insurance to and who to refuse to
| cover in the event that Republicans gain control of the
| government and repeal the Affordable Care Act?
| astrange wrote:
| No, because health insurance companies already know
| perfectly well what health conditions you have, since
| they can see your medical spending.
|
| After all, they didn't need your genes when they were
| denying care in the 90s.
| xhkkffbf wrote:
| But is it bad for there to be a cache of data for research? I
| don't even care if they make a great profit because if
| there's a great profit to be had it means that some drug came
| out of the research. While I'm generally cynical about many
| of the drugs, I do like the fact that the industry tries
| hard. Eventually they'll make something I want to take. And
| if this data helps them, all the better.
| dogman144 wrote:
| There are 3-4 companies like Invitae (and not 23andMe) that
| genetic counselors send their tests to for analysis and
| treatment coordination with the MD.
|
| Like another comment said, I think the DNA data 23andMe gets
| from their swabs and analysis is likely inferior from a drug-
| dev standpoint vs. what the pro firms do linked with the
| genetic counseling teams.
|
| In that light, 23andMe's options don't look good. However,
| probably good news for the patient. As I was told by a genetic
| counselor at one of the main hospital systems that do this, a
| bulk of their work is rolling back expectations from patients
| who did 23AM first, and then when to a GC.
| jjtheblunt wrote:
| what's PE? (edit: private equity?)
| dmoy wrote:
| Yes you're correct, Private Equity.
| jjtheblunt wrote:
| thanks
| jonathankoren wrote:
| > This is a damning indictment of Wojcicki's management of the
| company.
|
| I mean she was leader of YouTube. Why wouldn't she be able to
| develop a drug development strategy based on genomics?
|
| But hey, rich people can do anything right?
| lanstein wrote:
| Wrong person
| vrc wrote:
| That's her sister of famed "owned the garage Google started
| in" lore. This is the sister that was married to Larry Page.
| SOVIETIC-BOSS88 wrote:
| I believe she was married to Brin.
| sahila wrote:
| Married to Sergey*.
| mylons wrote:
| such a dystopian outcome that peoples DNA and medical
| information is just going to be sold?
| ilrwbwrkhv wrote:
| I want to learn the secret dark arts of VC capital raise on
| lies. I don't need the money but more for the hacking.
| nameless912 wrote:
| Unending confidence and carefully curated reality distortion
| fields. Having watched the CEO at a previous job do it, it's
| infuriating and a gigantic pain in the ass for engineers to
| have a leader lie to investors and then have to deal with the
| fallout as deadlines approach.
| lupire wrote:
| Try marrying a billionaire.
| toader wrote:
| Not encrypting user data and then being hacked resulting in
| compromised user DNA details certainly isn't a positive for PR.
| Can someone tell me why more companies don't encrypt data at rest
| and if that would have prevented the leak?
| bombcar wrote:
| Because actually encrypting at rest usually offers a ton of
| hassle for little _actual_ additional security.
|
| For example, if done right, you need to decrypt with some form
| of passcode/system on boot, etc, etc. But once "unlocked" the
| system has access to the data, and usually the hackers come in
| via the "live" system.
|
| Things like backups are _usually_ encrypted but not always, but
| the number of incidents of people stealing physical media is
| pretty low compared to ransomware /remote hacks.
| GartzenDeHaes wrote:
| Encrypting data at rest in a data center doesn't provide as
| much protection as you might think. The level of system access
| in order to access the raw data files is usually about the same
| as accessing the higher level database system itself. So at
| best you're adding a couple of extra steps to the attack.
|
| Since there are usually significant costs to encrypting
| production databases, such as CPU utilization, many
| organizations choose to focus on other security controls. Data
| encryption is just one of many security controls at play in a
| scenario such as this and the security team has to carefully
| pick their battles to avoid just being completely ignored as
| the "say no to everything" guys.
| jibe wrote:
| The hack was logging in with reused user credentials, then
| scraping the ancestry data. Encryption would not have helped in
| this case.
| al_borland wrote:
| Now we get to see the compromises they choose when desperation
| sinks in.
|
| I think getting the results of one of these tests would be
| interested, but I haven't been able to bring myself to do it, due
| to trust issues related to handing over something like that to a
| company with an unproven track record when it comes to privacy
| and integrity. I figured it was only a matter of time before they
| were hacked or they decided to sell out their users for profit.
| They've already been hacked, so now it's time to see what they
| willingly do with that data when their back is against the wall.
|
| I wish I could get a test done by a lab, be given the results,
| and have that be the end of it. No accounts, no forever records
| kept by the lab/company. Just a simple testing service that isn't
| trying to be a tech company.
| throwway120385 wrote:
| > I wish I could get a test done by a lab, be given the
| results, and have that be the end of it. No accounts, no
| forever records kept by the lab/company. Just a simple testing
| service that isn't trying to be a tech company.
|
| EMR has put paid to this pretty handily. Every positive STD
| test anyone ever gets from now on is yours for the taking if
| you can crack LabCorp's database.
| brycewray wrote:
| Repeating a comment from 2021[0]:
|
| "Entrepreneurs are not at all like ordinary businessmen. An
| entrepreneur who is not in trouble closes no avenues, keeps a
| lot of balls in the air, and will never tell you the whole
| truth when a half-truth will do. An entrepreneur who is in
| trouble will lie, cheat, and steal. He will smuggle cocaine or
| ship bricks. We should never measure an entrepreneur by the
| standards of a rock-solid businessman." -- attributed to
| Kenneth Rind[1]
|
| [0]: https://news.ycombinator.com/item?id=28060166
|
| [1]:
| https://books.google.com/books?id=MQvGc8Ee1SsC&pg=PA137&lpg=...
| supahfly_remix wrote:
| All of the rest of the quotation makes sense to me, but I'm
| wondering about this part:
|
| > "We should never measure an entrepreneur by the standards
| of a rock-solid businessman".
|
| Is the author saying that a rock-solid businessman follows a
| higher code of ethics?
| brycewray wrote:
| I guess it depends on what he meant by "rock-solid."
| fuzzfactor wrote:
| >I guess it depends on what he meant by "rock-solid."
|
| Exactly.
|
| There's more than one kind of rock-solid.
|
| Someone who is a rock-solid entrepreneur will not lie,
| cheat, or steal whether they are in trouble or not.
|
| OTOH an "ordinary" non-entrepreneurial businessman may
| just be one who has not faced trouble (may also have a
| lot less risk of that) and not started to lie, cheat, or
| steal. Yet. But may do so any minute at the drop of a hat
| and you would never know.
|
| No need for a difference in codes of ethics, rather
| different kinds of rock-solid for thee than me.
|
| It's easy to remember when Enron was a rock-solid client,
| packed with ordinary businessmen from ordinary business
| schools and typical backgrounds, until one day it wasn't.
| Wasn't rock-solid that is, and able to pay. All the
| businessmen there remained ordinary after that
| regardless, except for the few whose ethical
| transgressions were among the "unavoidable handful" for
| which there were serious legal implications.
| pc86 wrote:
| The sentence immediately preceding your quote are things
| that a "rock-solid businessman" would never do according to
| Rind. So it sounds like he is saying that theoretical
| person has a higher code of ethics for whatever reason.
| AndrewDucker wrote:
| Because they're intending to be around for the next
| decade or more, they need to preserve their appearance of
| probity, and so they'll do fewer things which would make
| them look bad.
| deadbabe wrote:
| Rock-solid businessmen understand business and how it
| works. Nothing personal, only business.
|
| Entrepreneurs are strongly driven by ego, their identity is
| personally tied to the thing they're doing. There is
| immense pressure to succeed, not just for the money, but
| for their personal validation. It's not enough to succeed,
| people must see you succeed.
|
| Otherwise, they'd just open some boring small business no
| one cares about instead of a hot new startup.
| dkarl wrote:
| > I haven't been able to bring myself to do it, due to trust
| issues related to handing over something like that
|
| Same here. Imagine the value of this data in the hands of
| insurance companies that are willing to misuse it. Will we, as
| a society, be able to prevent that "value" from being realized?
| samtho wrote:
| Federally, health insurers cannot use this data under GINA[0]
| and SB41[1] in California requires explicit permission be
| granted by the customer in order for the data to be shared
| with 3rd parties. In general, however, insurance companies
| are going to be reluctant to trust this information as it's
| not established that it has real medical value outside the
| handful of markers we've clearly identified.
|
| [0]: https://medlineplus.gov/genetics/understanding/dtcgeneti
| ctes...
|
| [1]: https://leginfo.legislature.ca.gov/faces/billTextClient.
| xhtm...
| Analemma_ wrote:
| Oh, it's against the law! Well that's ok then, companies
| never break laws.
|
| In reality, there will be (and probably already is) an
| impenetrable web of "data aggregators" buying genome data
| from other aggregators who are buying it from still other
| aggregators, so that the info will be thoroughly laundered
| by the time it actually gets to the insurance company to
| hike your premiums. This both obscures its true origin and
| lets there be a little contractor to throw under the bus
| when discovered and deflect blame. Don't fucking kid
| yourself: if personal genome data is useful, it _will_ be
| used, no matter what the law says.
| ilovetux wrote:
| I'm more worried about a scenario like Elon Musk buying the
| company for the data and making the data available to
| extremists who would love to target people of certain ethnic
| backgrounds who happen to be in positions of power.
| bedhead wrote:
| The last 5-8 years in tech were like the steroid era in baseball.
| We thought all these people were geniuses but virtually none of
| them can make their business models work without free money and
| investors looking the other way on profitability. 23 and Me being
| worth billions is like Brady Anderson hitting 50 home runs.
| coolThingsFirst wrote:
| Honestly it's good from that aspect. CRUD apps bring worth
| billions just does the make sense.
| TheCaptain4815 wrote:
| So what happens to my DNA data if they go bankrupt and start
| auctioning "assets"?
| Jun8 wrote:
| Wikipedia entry has:
|
| "In 2007, Cusenza left to join Nodal Exchange as CEO the
| following year. Avey left in 2009 and co-founded Curious, Inc. in
| 2011."
|
| Cusenza is not mentioned in the article (he was president, too)
| and evidently Avey didn't just "leave".
| BasilPH wrote:
| > As an added security measure, we have temporarily disabled the
| ability to download your raw genetic data. We hope to re-enable
| this ability soon, and we appreciate your patience.
|
| After reading this article I decided to download my data in case
| they go under. Was greeted with this message on the relevant
| page. Does anybody have some insight if this is related to the
| data breach or something else?
| epmatsw wrote:
| They've been doing that for months. Scummy behavior tbh. It
| happened right after the hack, but there's also a new crop of
| competitors that let you upload your raw 23andMe data, so
| there's speculation that it's trying to stop the outflow.
|
| If you email them about it, you just basically get a copy-pasta
| reply restating the message on the site, and if you keep
| emailing them 3+ times asking for a refund (ask me how I know),
| they'll tell you you can manually upload identity verification
| and they'll get back to you in 6-8 weeks with the data.
| BasilPH wrote:
| Thanks for letting me know, I'll try that.
|
| My guess is also that they use the hack as an excuse to keep
| people in.
| ProjectArcturis wrote:
| I believe under HIPAA, you have the right to access any of your
| medical data. If you really want your data, I would get a
| lawyer to write a nasty letter to them demanding it.
| angry_moose wrote:
| So far, genetic testing firms haven't been considered to be
| covered by HIPAA:
|
| https://lawforbusiness.usc.edu/direct-to-consumer-generic-
| te...
| astura wrote:
| As usual when HIPAA is brought up, you're wrong. HIPAA is the
| most misunderstood law in America.
|
| Hint, the "I" in HIPAA stands for "insurance." A general rule
| - if an insurance company isn't involved HIPAA doesn't apply.
| HIPAA is a law that regulates insurance companies and
| entities that deal directly with insurance companies, not
| "medical data."
|
| HIPAA doesn't apply to 23andMe. At all. HIPAA only applies to
| "covered entities" - https://www.hhs.gov/hipaa/for-
| professionals/covered-entities...
| kube-system wrote:
| > A general rule - if an insurance company isn't involved
| HIPAA doesn't apply.
|
| Not exactly. If you go to most any healthcare provider, and
| pay out-of-pocket, HIPAA still applies. More accurately,
| HIPAA applies to any healthcare providers who transmits any
| health information in electronic form in connection with a
| transaction covered by 45 C.F.R. SS160.103. Or in other
| words, basically every healthcare provider is also a
| covered entity, unless they're completely 100% cash only
| and don't take insurance for anyone ever. Do these even
| exist?
|
| Although, still 23andMe wouldn't be covered because they're
| not providing healthcare services.
| astura wrote:
| >basically every healthcare provider is also a covered
| entity, unless they're completely 100% cash only and
| don't take insurance for anyone ever.
|
| This is correct - I should have been more specific. If a
| business doesn't take insurance then HIPAA doesn't apply.
| Not that insurance isn't involved in a specific
| transaction. I've edited my GP comment to be more
| specific.
|
| >Do these even exist?
|
| Yes, absolutely.
|
| https://www.healthline.com/health-news/these-doctors-
| accept-...
|
| https://www.nytimes.com/2012/11/24/your-money/dealing-
| with-d...
|
| https://www.fawkeshealth.com/insights/are-cash-only-
| clinics-...
|
| So-called "pill mills" are almost always cash-only when
| they operate.
|
| There's also health centers on university campuses that
| are funded through student fees and don't bill insurance.
| wslh wrote:
| Please ELI5: I understand that one of the key features of 23andMe
| is their health report because the genealogy and the DNA dump are
| included in other companies.
|
| For a developer plus a scientist it is teally difficult to get
| the health data from the raw ADN and using current (Python?)
| modules?
| 331c8c71 wrote:
| Health report? They only have limited info about your DNA
| (common small variants).
|
| The further you move from obvious disease-causing or high-risk
| mutations the more expertise you need. But even there you need
| where to look and how to present the results.
|
| The real (honest) question is what such reports cover and what
| qre the precision/recall? Answering that requires far more than
| duct-taping a few python modules.
| wslh wrote:
| That is why I asked about having a scientist (or many of
| them). From your answer I understand that for every health
| condition, and probably jointly, you need to do an analyzer?
| I am trying to understand the complexity from a CS
| perspective. You have the string that is your DNA and then
| you need to pass different functions with their own
| complexity for detecting each health issue?
| progbits wrote:
| What would be the rough cost of equipment and consumables
| required to do DNA sequencing for say 10 people? Assuming similar
| genome coverage as 23andme gets.
|
| Last time I researched it the estimate was 5-6 digits, but I'm
| sure technology advancements have made it cheaper. What happened
| to that $1000 nanopore?
|
| I have some acquaintances with lab experience who could run this,
| and could split the costs between friends and family. Everyone
| gets their own data, no copies are made, all samples are
| destroyed. We can resell the equipment after to recover some of
| the costs.
|
| This is the best way to be sure about the data not leaking or
| getting sold to boost CEO bonus.
| kleton wrote:
| BGI (formerly Beijing Genomics) would be the one for you.
| https://www.bgi.com/us/sequencing-services/dna-sequencing/wh...
| progbits wrote:
| That seems like a service you send samples to.
|
| I want to buy a machine, observe the whole process myself and
| then destroy/scrub the machine.
| stanford_labrat wrote:
| If you really want to do this I would just do it like we do
| it in academic labs. Prep the DNA yourself and send to
| Illumina who will do the sequencing and send you the raw
| data.
| kleton wrote:
| BGI does not sell the machines they reverse-engineered from
| Illumina. You can sometimes find old Illumina machines on
| ebay, or buy a new NovaSeq for a about a million.
| genomer wrote:
| The Nanopore Minion is still a thing, but it's sequencing and
| has higher error rates than competing short-read methods like
| Illumina's sequence by synthesis.
|
| https://nanoporetech.com/products/sequence/minion
|
| Sequencing DNA with nanopores: Troubles and biases
| https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8486125/
|
| Based on what I'm seeing from 23andMe's website they only do
| genotyping, not sequencing.
|
| https://customercare.23andme.com/hc/en-us/articles/227968028...
|
| "23andMe uses genotyping, not sequencing, to analyze your DNA.
| Sequencing technology has not yet progressed to the point where
| it is feasible to sequence an entire person's genome quickly
| and cheaply enough to keep costs down for consumers. It took
| the Human Genome Project, a consortium of multiple research
| labs, over 10 years to sequence the whole genomes of just a few
| individuals."
|
| Edit: https://www.23andme.com/total-health
|
| I guess they started providing whole exome sequencing, but I
| can't find information about what depth they're doing it at.
| progbits wrote:
| Sure I don't need a full sequence, just the bits used for
| health features on 23andme.
|
| Of course the closer to a full sequence the better as any
| future research could be used by just reading existing data.
| But realistically just having data on few hundred most useful
| markers is enough.
| psanford wrote:
| Sounds like its time to export your data and delete your account
| before they get sold to someone who will do who knows what with
| it.
| kjellsbells wrote:
| Ah, 23andMe, the Experian of DNA.
|
| Look, I give her great credit for the women in STEM thing, her
| perseverance in the light of obstacles, and making a 10$ lab kit
| worth $399 to buyers. But to not understand how far actors would
| go to get hold of that data, to not understand that the drug
| industry is brutal because humans are poorly-understood meatsacks
| (see: anything by Derek Lowe), well, seems like that Yale
| education didnt impart a whole heap of reflective thinking
| skills.
| bumby wrote:
| > _10$ lab kit worth $399_
|
| Can you elaborate? Does this mean they've added $389 in value,
| or they swindled people of $389?
|
| If it's the former, what did they do to create that value? (Not
| being snarky, I don't know enough about their business and am
| legitimately curious. There seems to be a lot of comments here
| about unfulfilled promises.)
| Sohcahtoa82 wrote:
| You have to define "value".
|
| Personally, I roll my eyes any time someone questions
| "value". If a customer is willing to pay $399, then obviously
| they put the value of whatever the results may be from it at
| at least $399.
| kjellsbells wrote:
| The former. That is, they convinced people to pay a premium
| over the material cost of the test. Nothing skeevy about
| that, just good marketing. Assuming that customers were not
| misled.
|
| "It's not a pencil, it's the thing that writes the next Moby
| Dick" - that sort of thing.
| oldgradstudent wrote:
| How could a company, that provided me the amazing insight that I
| have 71% likelihood of having little or no back hair, fail?
|
| BTW, I have quite a lot of back hair. Most of the other physical
| features are wrong.
| JumpCrisscross wrote:
| Request deletion of your data here:
| https://customercare.23andme.com/hc/en-us/articles/212170688...
| ibern wrote:
| Their therapeutic area focus was far too broad. Going after
| "dozens of diseases" in parallel was a recipe for disaster. It
| takes a very specific understanding of your disease to translate
| genetic insight into a mechanistic, testable hypothesis.
| lestertomlin wrote:
| I mean this is the Silicon Valley playbook. Get raised by some
| ultra connected family. Start a company, get money from your
| family then get pictures on Inc mag as some self made genius
| founder.
| egberts1 wrote:
| It is good OpSec to scramble your DNA every six months, says no
| one ever.
| jWhick wrote:
| I never got that company, to me it seemed foolish from start.
| AlbertCory wrote:
| > To create a recurring revenue stream from the tests, Wojcicki
| has pivoted to subscriptions.
|
| Just in case, you know, your DNA changes /s
|
| I attended Ann's talk at Google when she was still with Sergey.
| They had spit kits in case anyone wanted to do it on the spot (I
| didn't).
|
| When President Clinton announced the completion of the human
| genome project, he looked forward to all the wonderful drugs that
| would follow therefrom. Then I took a number of extension classes
| in molecular biology and drug discovery, and learned from the
| people who actually do it that DNA information is often helpful,
| but it's not a silver bullet.
|
| > Sequoia, which invested $145 million in 23andMe, still holds
| all its shares, he said. Today they are worth $18 million.
|
| .. and this is why those VCs get the big bucks /s
| 331c8c71 wrote:
| > Just in case, you know, your DNA changes /s
|
| It absolutely does. That's how cancer occurs btw. The term is
| "somatic mutations".
| AlbertCory wrote:
| I'll confess my ignorance here, but would your saliva cells
| also show it (assuming it's not a mouth or throat cancer)?
| And it is is, wouldn't you have noticed something before your
| regular "checkup" from 23andme?
| 331c8c71 wrote:
| Good question. I think this should answer your questions
|
| https://bmcmedgenomics.biomedcentral.com/articles/10.1186/s
| 1...
|
| https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4009603/
|
| Speaking of detecting cancer indirectly, it is actually the
| fact that sometimes you can detect tumors (early) because
| their DNA or RNA products reach the blood or other bodily
| fluids (cfDNA/cfRNA for "circulating free"). It is a big
| and a recent thing - for many cancer types e.g. lung there
| was basically no easy way to test. Biopsies are very
| invasive obviously....
| AlbertCory wrote:
| 23andme wasn't offering blood testing every year, though,
| right? Nor claiming to detect new mutations in subsequent
| saliva tests, AFAIK.
| coolThingsFirst wrote:
| Tribe follows tribe and nation follows nation
| dundarious wrote:
| Why do people believe genetic testing offers a pathway to a wide
| array of beneficial (non-snake oil) tailored drugs and
| treatments? What is the scientific basis for this belief, other
| than "seems plausible" reasoning?
| sjducb wrote:
| 20 years ago it was pretty plausible. Most of the genetic
| effects that we knew about were large. Maybe all of them were
| large?
|
| Now we know that most effects are small, and there aren't
| useful interventions that can treat the effects.
| jakupovic wrote:
| Did they kept the kits sent in? Thus still sitting on many DNA
| samples. The storage costs money but the data is probably worth
| it. Not sure who to ask?
| redder23 wrote:
| Only total morons pay to let a company sell their genes. Happy
| downvoting, I know this will offend a bunch of people in this
| crowd.
|
| In a sane world this thing should have never work in the first
| place but given the world is full of morons who are dumb enough
| to actually pay for shit like that its quite an accomplishment to
| run a company like that into the ground.
|
| I read articles of people sending in banana DNA 23AndMe or a
| similar service and they got a supposedly ancestry tracking back.
| These services are dubious at best and you literally sign your
| DNA away to be sold to the highest bidder in their terms. I would
| not do this FOR FREE, let alone pay a ridiculous $130 for it.
| robotburrito wrote:
| I understand your take, and in many ways regret sending my data
| to them, but through this service I did find 6+ siblings I was
| not aware of, as well as my father. So it does provide some
| benefits.
| LAC-Tech wrote:
| I'm no economist, but isn't that to be expected?
|
| - A burst of people take your DNA test
|
| - Much less people will subsequently, as your target becomes
| younger people who are now old enough to pay for DNA tests.
|
| Seems like you'd have to whether being way under-capacity for the
| initial burst, and then essentially a return to normal.
| neveracool wrote:
| > 23andMe had a data breach this fall that exposed nongenetic
| information of 6.9 million customers
|
| Why does it specify "nongenetic"? Is it because the passwords
| were exposed? Doesn't that mean that any information accessible
| with those passwords can also be considered breached?
| whyenot wrote:
| I found my biological father and a half-sister thanks to 23andMe.
| It's hard for me to fully express how much that has meant to me.
| While I am fully aware of the bad side of DNA testing that many
| have raised here, I just want to also point out that there is
| also good that can come from these tests.
| 1vuio0pswjnm7 wrote:
| Alternative non-paywall link:
|
| https://cc.bingj.com/cache.aspx?d=1180808593353&w=TdklVuJENI...
|
| (archive.is will not work in some parts of the world)
| breck wrote:
| I was an early adopter of 23andMe. I bought many as presents and
| recommended it to many, many people. I even bought some stock
| after the SPAC (not the best investment :)).
|
| I have no regrets, and still rooting for them.
|
| There is something magical that I could spit in a tube, and my
| cousin could spit in a tube, and then weeks later we got emails
| saying "Out of millions of users we found your cousin just from
| spit!"
|
| As kids we are lied to about a lot (the big guy in a red suit,
| for example), so part of growing up is verifying that what you
| are taught is actually true. If you did not major in biology, you
| don't have an easy way to verify that what you are told about
| genetics, DNA, and evolution is true. 23andMe provided that easy
| test for the layperson. I think that alone is worth the hundred
| bucks.
|
| The joy I got from verifying DNA is at the core of life is like
| the joy I got from Intro to Electrical Engineering, building my
| first circuit with logic gates, and realizing that indeed
| everything is built up of 1s and 0s.
|
| It seems they haven't developed more of a business beyond that
| novelty. I think I was expecting they would come out with future
| innovative offerings, given that their first was cool and done
| pretty well.
|
| I was never crazy about the drug development plan. Seems like a
| more logical first step would be to combine with a fitness
| wearable company (Goog/Fitbit, Apple, Oura Ring, Whoop, Garmin,
| Samsung, etc), that there might be valuable insights from those
| datasets merged.
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