Think the obvious one is that the results are shared and whether someone is a criminal or not (or will be one in the future), people are not particularly comfortable with sharing to parties they didn't initially trust it to for the purposes they trusted it for.
Anecdotally, I bought a 23andme kit (just the genealogy one) but never submitted it because the labeling was to send it to the lab in the next town that manages the company I work for's drug screenings. Well, I don't think I have any pre-existing conditions and certainly don't do drugs, but I don't know about any unknowns on the health side that could impact my insurance if they were to share it to the company. Forget that.
Honestly, I would also say that a partial reason why these would've dropped is that everyone who can do it has done it.
You only need these kinds of results once because your DNA doesn't change. I knew people who were giving or had gotten these as gifts, but those are one-off purchases. And if you've heard of people doing it then you'll do it too but that's also a one-off.
I don't think I'd personally benefit because my family came to the US relatively recently from a country that has very few records going back very far, that haven't been destroyed. So what would be the point for me?
I did it 6/7 years ago because the novelty, and enthusiastically recommended it to family and friends. Now I regret doing it considering how Google and Facebook has abused consumer data. I definitely would not submit my kids to the same fate.
If the government encounters one of their kid's DNA, that's enough to identify them as a son/daughter of the person with that DNA profile.
If a medical insurance company purchases their DNA, analyzes it, and anticipates that a child of theirs is likely to have medical costs 5x the average, those costs will be passed on to those kids, absent legislation to the contrary.
This applies to everyone you're related to, as well.
> If the government encounters one of their kid's DNA, that's enough to identify them as a son/daughter of the person with that DNA profile.
I don't believe that's ever been tested in court (so there isn't precedence) and the ways in which DNA are complex enough - and the mutation rate is high enough - that it might be like fingerprints... if you're the only person with DNA that might be like the kind found and you've got some serious suspicion around you for other reasons... then they might be able to use it as supporting evidence or to compel you to submit to DNA testing to confirm the match (which apparently does have precedence in the US... wow America)
Uh, it absolutely has - and with more distant connections than direct parentage. See the recent Golden State Killer case for instance, as well as a myriad of others.
That shows it's enough to establish probable cause, but once they'd identified him, they got a direct DNA match, which means he won't be a test of the ancestral scenario outlined in the GP.
Yeah, this isn't science fiction or conspiracy theory anymore. Several high-profile cold cases have gone hot as police have been trawling the datasets submitted to 23AndMe et al and investigating the family trees of persons whose DNA is similar-ish to the samples in unsolved cases. [0]
The results are mainly bupkis anyway, and you're paying for the privilege of having police agencies across the country (world?) give extra scrutiny to you and all of your relations. No thanks.
It's all tradeoffs, I want some privacy, but I also like crimes being solved. In fact, I'd see that as a benefit even if I'm related to criminals. Of course this assumes it is used correctly and fairly, which is the hard part.
This is similar to the typical "encryption is for pedophiles" argument. Privacy doesn't mean that I am a criminal and/or my brother/sister/father/mother/children/cousins are murderers.
I also like ALL crimes to be solved and the guilty ones to get what they should, and the innocent ones to be living a life outside jail.
But we got something called "fundamental rights" (at least imho). One of them is privacy. NOT having an insurance company ripping me off because my father had X-Y-Z disease is another right I would like to have. They are already making billions as is. The ones that don't, should get their s..t straight and stop bleeding money for stupid reasons (yes I know from experience). No need to give them the bullet that will injure me (financially).
I think that all these DNA tests was a fad. Kinda like facebook was. People realize that they get very little value from it, and it most likely come back and kick them in the shin one way or another.
What about when devices come that are sensitive to read people's minds as they walk down the sidewalk ?
Monitoring citizens minds would be a tremendous boost to solving crimes. This rule will be equitably applied to all citizens by a fair and principled government excepting special groups like oppressed minorities or members of the government/military themselves.
I personally feel that privacy and individuality holds much more value than solving crime. I hope society never comes to the point that they'll allow government to do anything to them in order to provide "safety"
How so? They point out the difficulty balancing personal privacy and tools to identify criminals who have evaded justice. Just because you don't agree with the relative importance placed on either side doesn't make them dumb or naive.
What makes you naive is if you put any smidegeon of hope into the fact that insurance companies will not hesitate to buy and abuse such data to fuck you over left, right and central then you really are beyond help.
If you want to risk that, fine. But you're also screwing all your relatives in the same swell process.
And that's not only naive and dumb, that's totally reckless.
The solution to that is to abolish or neuter your insurance companies like the us in the rest of the world did. The fact that a private for-profit company decides if you live or die is absurd.
Last I checked, medical and life insurance is a thing everywhere else in the world as well. While a public healthcare system will pay for your treatment, it will not pay for the loss of earnings/business during your stay in the hospital and convalescence, nor will it pay you if you end up with a permanent disability (social security may cover a pittance of the latter).
it will not pay for the loss of earnings/business during your stay in the hospital and convalescence
I can't speak for other countries in Europe. But in Switzerland you have mandatory coverage from your employer.
The employer will pay your salary for a certain amount of time. After that insurance will kick in and pay (usually) 80% for up to a couple of years.
After that invalidity insurance kicks in. That's usually about 60% of your salary until retirement. You can buy added coverage to raise those percentages.
Bankrupcy for medical reasons is pretty much unheard of herearound.
That's why I also stuck the word "neuter" in there. It's not difficult to regulate what insurance companies are allowed to consider. Data brokerage can also be regulated (the GDPR would not allow 23andme to sell genetic data to insurance companies without strict opt-in)
the GDPR would not allow 23andme to sell genetic data to insurance companies without strict opt-in
That's true. But there's a different issue and the very reason why I would never do such testing.
An insurance company cannot enforce a genetic test on you in order to write a policy. What they can and will do, however, is ask you in the questionaire for such a policy if you did a genetic test and if yes they would oblige you to share the results before writing a policy.
The problem here is you can't lie. If you did a test and you deny it and it's proven later that you lied the insurance will refuse coverage.
So it's in your best interest not to get tested at all.
My understanding is that it's very different in the US. Such data is insanely valuable to insurers and that directly translates to the prices they're willing to pay for it.
Unethical? Sure as hell. Illegal? Probably not without a strong legal framework.
I think the level of "corrupt" is up for some debate, but it's pretty inarguable that the US pays substantially more for a system that is objectively worse in many ways.
>the US Healthcare system is second to none in the world
77th or so maybe to some, but definitely not second to anything, sure.
> The actual CARE people in the US get is the best in the world,
No, it's not consistently. The care a very small fraction get is, perhaps. But even for most of the people who get care it's not.
> It is fucking expensive and has issues with how we go about paying for it largely do to government regulations and interference in the market place
The places that provide equal or better outcomes at far lower prices (both per GDP and per capita) don't have less-regulated markets. So, no, I don't think you've identified the actual problem correctly, though I get that that's always going to be the explanation offered by those dogmatically devoted to the religion of laissez-faire.
I Honestly do hope the US does go Single Payer, we will see health care innovation and advancement stop, no new drugs, no new procedures, etc as almost 100% of that is funded by the very people you despise, the American people.
>The care a very small fraction gets is, perhaps. But even for most of the people who get the care it's not.
that is simply not true, most of the studies, rankings all factor in "access" due to price, if you remove price as a factor then there is no better system in the world
>>The places that provide equal or better outcomes at far lower prices (both per GDP and per capita) don't have less-regulated markets. So, no, I don't think you've identified the actual problem correctly,
I have, we have the worst of both systems. We have all the regulations of a Government-run system without the Price controls.
Single-Payer would be cheaper than our current model, it would also provide worse care.
The free market would be the best but I fear that ship has sailed, the world will need to destroy all innovation and collapse the health systems everywhere before anyone will want to try Free market again
Socialism always fails, the one thing keeping every other nations socialist system working is the American system, we pick up the slack, (just like in defense)
That is one of the reasons I become more and more isolationist every year.
> that is simply not true, most of the studies, rankings all factor in "access" due to price
That's because access due to price affects what care people actually get from the system.
> if you remove price as a factor then there is no better system in the world
No, even if you don't consider how ludicrously expensive the US healthcare system is, the outcomes it produces aren't exceptional.
Now, if you mean if you remove the actual effect price has on care the US system would be great, sure, but that's different than removing separate consideration of price as a factor. And impossible, as well.
Which has not been done in court? I work in juvenile dependency law and we use paternity-by-DNA to establish and disestablish fathers every day. Other divisions of the DOJ use DNA to establish parents for the purposes of childcare payments. There are loads of statutes and case law regarding DNA testing to determine parentage.
A parent/child relationship is crystal clear in the genetic data (barring the case where what you're actually seeing is an aunt or uncle and the child of their identical twin).
And I'm pretty sure paternity tests have a lot of precedent in US courts.
No, I mean that your identical twin's child will appear to be your child under a genetic test, for the obvious reason that you and your identical twin have the same genetics.
Actually, they are expressly prohibited from using your genetic information to make decisions about your coverage. It's the Genetic Information Nondiscrimination Act (GINA) [1], where:
> ... health insurers may not use genetic information to make eligibility, coverage, underwriting or premium-setting decisions.
However, it doesn't apply to all insurance:
> It does not cover long-term care insurance, life insurance, or disability insurance.
Huh, had no idea, thanks for bringing that up.
Obvious follow-up question: Say the insurance company is using a third-party that they buy some kind of individual "healthiness/sickness benchmark" from, that just so happens to be heavily derived from on this genetic information, which the health insurer never sees in raw - would that fall under this? Seems like an easy way to skirt this regulation, but i am obv NAL.
This is good, but also leads to the obvious follow up question of how stringently it has and will be enforced. It's also illegal to lose PII and credit info for millions of people but, well, here we are.
Also, parallel construction. Also, data laundering - you drop DNA test data into a business analytics third party, and two data brokers later this arrives at your insurance company as a personal profile "created from data about your shopping habits collected on-line and off-line", or something like this. Don't know for sure if that's actually happening, but I assume it is.
How far removed from genetic data does the data have to be so that insurance companies can use it? Can I start a business that analyzes genetic data for know risk factors and then sell only the risk factors to insurance companies?
Well, yeah, in the sense that a chimp and a human are about 98.5% similar.
But from that point of view, humans are 99.9999% similar.
The other point-of-view is that a male and a female of a species will end up with approximately 50/50 similarity to either parent.
These are different measures coming from different point-of-views. If I were Gengis Khan (and who is to say that I was not!), then I could have impregnated enough women over my days on the steppes, to have, 1000 years late, up to countable percentages of my far-far-far descendents actually detected in tests as being my actual descendents.
Please don't conflate "this dna comparative measure" with "that dna comparative measure". It's all (theoretically) straight forward, and, yes, compounded by empiricism, but these are different measures, regardless.
If they get a sample from the kid, they will be able to say with certainty that the commenter is the parent.
They wouldn't be able to tell the difference between kids of the same gender, but if you only have one kid or a boy and a girl, they would be able to pick out the kid.
They caught him because a relative had submitted their DNA.
>Investigators compared the DNA collected from a crime scene of the Golden State Killer to online genetic profiles and found a match: a relative of the man police have identified as Joseph James DeAngelo, 72, who was arrested Tuesday at his suburban Sacramento home.
The same sort of scenario is possible for medical related things.
"John Smith has these health risks, oh look he's listed as the father of our client Jane smith so she likely carries these health risks. Adjust her rate/drop her policy".
That said, I willingly gave my DNA to 23andme & Ancestry.com, I find the stuff interesting and worth the potential future risks. Once whole genome falls below a few hundred dollars I plan to have that done too.
IIRC you can request the data to be deleted. You have no way of knowing if it's been done correctly, but at least it's something you could do to prevent your kid's DNA from effectively being there.
"23andMe and our third party genotyping laboratory will retain your genetic information, date of birth, and sex as required for compliance with applicable legal obligations, including the U.S. Federal Clinical Laboratory Improvement Amendments of 1988 (CLIA), California Business and Professional Code Section 1265, and College of American Pathologists (CAP) accreditation requirements.
23andMe will retain limited information related to your data deletion request, such as your email address and Account Deletion Request Identifier, as necessary to fulfill your request and for the establishment, exercise or defense of legal claims."
So they'll retain your DNA info and personally identifying info that you provided, forever. But the physical sample will be destroyed.
It won't protect you from nefarious actors with the data right now, but it will potentially protect you from nefarious actors who may someday get ahold of the db.
She wanted me to do it instead of her because you can get more information that she cares about from men than women, due to certain things linked to sex chromosomes.
What was your opinion 6/7 years ago about the people raising these concerns? Were you aware back then that sometime in the future you will (probably) regret it?
Nah, half is plenty to identify someone. If one of your kids sent in a sample today with a fake name, it would pair you up immediately and identify that they are your children.
The US Government already has my DNA thanks to my military service. I very much hope that they aren't sharing it with private companies though. Despite the government having my DNA I would still never give it to 23 and me.
I would be shocked if IAFIS didn't have that stored in South Carolina strip-mall hosted database like all the other biometrics they can get from birth, disease, criminal activity, police, federal and military service. The feds do love their biometric data.
You can buy shares that give you voting rights in a company, and you can decide to spend (or not) your money with a company. The latter is not available to you with the government and has been shown, I would argue, to have a greater effect over a company than voting in a democracy, and that's as an individual. Maybe that's comparable with picking parties to vote for but it's not quite the same.
I wouldn't trust either form over the other though, and if anything, I'd want their incentives to be set up so they were mostly in opposition so as to limit the power of each other.
If I was to pick an abstract group to trust, it surely would be family first.
> Which is saying that you can only have a "vote" if you're wealthy enough.
No, it's saying you can vote if you buy a share. Are you saying that wealthy individuals in a democracy don't have an outsized advantage in shaping policy and the behaviour of government? But they have the same voting rights as you or me, so there must be something else going on…
> doing that doesn't affect the company's behavior.
You're saying that withholding your money from a company has no effect on its behaviour? Try cancelling a long standing account with a company today, like your phone provider, and see if it provokes any kind of response. You might get a free upgrade out of it.
I don't know that I'd say it's exactly equal, but the idea that any typical individual really has much say over the Federal Governments decisions is laughable.
Even if it were your local town, city, or county government managing it, do you think they're going to fight the federal government if they ask for access to it? Over you, a nobody, when the Federal Government is going to threaten to withhold money for whatever if they don't?
This is why we need smaller countries in any democracy.
Anything too big isn't democratic as much as political spending, alluring promises (that will be broken), campaigning, making the others look more evil than you, etc etc
Governments are made up of people capable of good and evil just the same as private companies. If we’re simply going by the historical record, governments have committed some of the world’s greatest atrocities in the name of certain genetic theories.
Certainly, they're different. I'm pretty confident about a company's profit motive; not so much with the government which changes every few years. I don't like a company having it (and will never take such a test), but like the government even less. The government's the one that can bust down my door at 3 AM, haul me away, and shoot me if I resist.
A company's direction is going to be aligned with the owners/shareholders goal, which isn't always but in most cases is profit. At least we know that.
Government? Who knows - whatever behavior emerges when you get a bunch of self promotors, egotists and idealists to compete amongst each other for whatever it is that each is individually competing for.
So in other words, with companies we know for sure the data will be abused badly, as much as possible. Governments are a wildcard; today they may actually protect this data and use it mostly responsibly. Tomorrow, they may bust your head for being related to someone or some group they don't like.
Not really, because many companies are owned by decent people who have a personal value system and their companies are reflections of that. Most business owners I've met are good and decent people. It's actually very hard to build a great company and team if you're aren't a genuinely decent person.
When a company is sold or is subject to the interests of people divorced from the original mission and values of the company, problems will likely emerge.
I guess my point is that you can't really trust anybody, because humans are the fundamental building block of both corporations and government, and their personal or collective self interests emerge to create issues regardless of their structure or purpose.
> because many companies are owned by decent people who have a personal value system and their companies are reflections of that
Sure. But in context of privacy, tell me, what personal value system is reflected in companies that suck in and process that data? I mean the marketing, the adtech, the data brokerage companies? Being charitable, I imagine it's "do well unto my customers (i.e. other companies); everyone else is irrelevant". Which I guess is defensible under the moral framework exploitative capitalism, but that doesn't satisfy me as one of those "everyone else" whose data gets processed. That people in companies that abuse my data have work ethics is not reassuring me in the slightest.
> When a company is sold or is subject to the interests of people divorced from the original mission and values of the company, problems will likely emerge.
I think almost all of companies are like that. In particular, VC-funded startups are like that from the day one - the investors are absolutely "divorced from the original mission and values of the company".
> their personal or collective self interests emerge to create issues regardless of their structure or purpose.
And my point is that if you look at the structure of these self interests, how they flow in the vector field of incentives, and if you look at what capabilities peoples, companies and governments have, the picture is pretty predictable: private companies will, on average, screw you over always, incessantly; governments (at least the western kind) will be friendly most of the time, but if and when they do decide to screw you up, the immediate consequences will be much worse.
The technology is here now. If a bad actor wants your data they can easily get it without you submitting anything. Unless you protect your bodily fluids I think you should generally already consider your dna compromised.
Since I'm a boring white male who isn't currently angering any "actors" of significant size I'm not too worried about that. I would be much more worried about 23 and me sharing my DNA than James Bond busting through my window and stealing my poop for DNA.
Not to worry, it’s a bit doubtful submitting DNA samples isn’t going to be obligatory at some point in the future. You can easily solve a lot of crimes with that.
That's not quite true. Your DNA doesn't change, but 23andMe only does partial sequences on those test kits. As new techniques become available they can't necessarily retest old samples, so customers who want more complete results in the future will likely have to buy and submit new kits.
They do, it depends how far back you signed up I guess. I did this many years ago, around the time they first launched and I got constant reminders that this or that new information is not available for me unless I upgrade to their latest chip. I think once I was able to upgrade by having them rerun the first sample I submitted, but at this point I think I’d have to send a new sample in if I remember the message correctly. But that seems like too much hassle so I haven’t done it.
>All in all, probably not hugely worth the expense. But I guess the novelty of it was fun.
Yeah, for me it was half novelty and half trying to figure out more about my father's side of the family. My father died just before I turned 13, when his father died about a decade ago I asked my great uncle what he knew about the family... he didn't even know his mother's maiden name which I only discovered at the end of last year, several years after my great uncle also died. I can trace part of my mother's side back with confidence to at least the 17th century, my father's family had gone cold in the early 1900s until I discovered my grandmother's maiden name.
Novelty is also why I want my whole genome done. Once it's down to a few hundred dollars I want to have it done and ultimately have it printed and put in binders, purely for the novelty.
I recently got an email or other notification of some sort offering a discount to get retested with their new V4 chip, as apparently my tests were run on V3.
I stand corrected. (That link doesn't work for me, but the one below does.) I guess I'm a recent enough customer that there's no need for me to upgrade.
New people are being born all the time. There are many industries based around one time purchases. Think appendix removal or weddings (that one may be more than once for some people)
There are many industries based around one time purchases. That doesn't make them immune to booms and busts.
23AndMe saw tremendous growth, both according to the article and my anecdotal experience, but that doesn't mean that the burst they saw was sustainable. It's looking, at least right now, like it's not.
Gifting someone a thing that could be used as a paternity test at a baby shower would be more than a little rude. And presumably if both parents have already done it why would you need to test the baby?
> And presumably if both parents have already done it why would you need to test the baby?
Before all the privacy concerns, I was considering getting my kids tested, even though my wife and I have both done it.
Mainly so that I could see which genes they picked up from each of us and if they got any new mutations.
Also, a situation that might be somewhat niche -- we had IVF, so it is possible there was a mistake in the clinic and the child wasn't made from us. I read too many stories about IVF clinics where the samples were switched by the employees with their own.
Even more mind blowing, through sheer clerical error, the children that came out of my wife could be mine but not hers!
Given that they look like us we're pretty sure the clinic didn't screw up, and at this point I would keep them regardless, but if I could discover an IVF mistake, the settlement would make for one heck of a college fund.
But 23andme will always show some differences, while individual SNPs have high accuracy >99% due to the amount that is being tested you will always have some results that are wrong. Multiple testing problem is an issue here.
This sort of thing really makes me wonder whether execs thought about this scenario or not. It seems obvious to me that the novelty could wear off and people stop buying kits. Was it worth the effort and cost to ramp up staffing only to make them redundant?
> Honestly, I would also say that a partial reason why these would've dropped is that everyone who can do it has done it.
In my immediate circle of acquaintances, that doesn't seem to be true. I haven't done it. I'm aware of it, but I've never looked into it, since I've never seen a reason to care.
Very good point, re-sales chances almost zero not allowing for product enhancements perhaps.
I use a blood test service (https://www.getlivesmart.com/) every six months but I can measure changes to my markets based on interventions to my lifestyle that they suggest post GP review. To me that type of service is worth it.
This makes no sense. Most people only go to paris once, of bunjie jump once, or a billion other things. Just because you do it once doesn't mean it is no sustainable.
While I get what you're saying, "most people only go to Paris once" is a very odd analogy to use in this case. Paris may be a tourist destination, but it's not a tourism company. :)
In any case, I think the caveat to what you're saying is that the sustainability of a business proposition that many people only do once (or at least, do comparatively rarely) also has to take into account the cost. Very people take a Jeep tour of the Grand Canyon, but the Jeep tour company is almost certainly a very lean operation compared to 23andMe.
Frankly, I think these mail-in DNA tests are like modern-day phrenology, but you could spin in that "pay us $x per year, and we will analyze your DNA every month once research becomes available".
The Genetic Information Nondiscrimination Act of 2008 (GINA) specifically prohibits health insurance companies from denying coverage or setting rates based on such tests.
You are correct but a major challenge of our time today and the near future is to see whether the rule of law still works against political or financial power. From the 2008 financial crisis onward, there is a growing public sense that the powerful cannot be held subject to justice any more.
I have to say that I personally would never purchase a DNA testing kit for this reason. On the social and political trajectory that I perceive, it might not matter what federal law says, if insurance companies can build a strong enough web of mutual favors with politicians or law enforcement.
Life insurance, disability insurance, long-term care insurance etc companies can use genetic data to determine costs for policyholders or to deny coverage[1].
Companies routinely demonstrate that they're often willing to do prohibited things. And this seems like the sort of thing that would be very hard to prove.
When it's in their financial interest, they will avoid doing things that cost them money. Lawsuits are one such cost. Which is why companies train interviewers not to ask any information that laws prevent them from using during the hiring process. If you don't know, clearly you didn't use that info for discriminatory hiring practices.
Similarly, there was a very recent article about how GINA might be acting as a privacy law, since companies would prefer just not to know:
But then, there's about zero useful information in genetic information when it comes to hiring. If there were useful information, I'm sure we'd see far more violations.
I'm far more concerned about access to life insurance, which is not covered by GINA.
Also, it's very unlikely that a 23andMe type test will have enough clinical information that would be useful even for life insurance purposes or health insurance purposes. Clinical genetic testing is far more powerful that way.
Which is why companies train interviewers not to ask any information that laws prevent them from using during the hiring process.
And yet it happens all the time. All. The. Time.
If it didn't we wouldn't spend tens of millions of taxpayer dollars on enforcement agencies and lawsuits.
It doesn't matter how many laws are passed, companies are still run by people. And people do bad things, either knowingly or unknowingly or just because they can.
That is true as long as the cost of lawsuits is higher than the potential gain from breaking the law.
Companies knowingly break the law all the time, reek in profit and send out an army of lawyers to pay some minuscule fine that doesn't impact their bottom line.
Fines that don't threaten to break a companies business are just ignored and basically written off as operating costs.
Exactly. Many people naively thought that it was going to be positive. Build your family tree, get better ancestry information.
Even finding family relations can be fraught with issues like illegitimate children, sperm donors who thought they’d remain anonymous, secret affairs now outed and then there is the other health data aspect...
On CBS Sunday Morning this past weekend Steve Hartman had a piece about a 23andMe-style test let him know his parents weren't his parents and his family tree is actually a shrub that grew on the wrong side of the tracks.
Being Steve, the story was told in an awww, shucks Ron Howard style with a happy ending, but I found it kind of disturbing.
Yeah, I don't feel at all bad about cheaters being exposed. But, children that result from that cheating... if you grew up thinking that your dad is your dad and then find out from a dna test that he isn't, that can really shake a person. And it's not from anything the child had any control over.
I don't know about 23andme, but I have read Privacy Policies of similar services in the past and they are all riddled with legalese and unclear phrasing that make using the service a complete no-go for me.
Also note that if the policy seems clear you have to follow and read the PP's of their partners and 3rd-parties, and then their partners, etc.
IANAL and you should be before bestowing your trust in such service, unless you don't mind having your DNA profile out in the open.
> Well, I don't think I have any pre-existing conditions and certainly don't do drugs, but I don't know about any unknowns on the health side that could impact my insurance if they were to share it to the company. Forget that.
In the US, only health insurance companies are not allowed to use genetic data to increase premiums or deny coverage, at least for now. I'm not sure what the rules are about using data derived from genetic data, however.
Life insurance, disability insurance, long-term care insurance etc companies are allowed to use genetic data to determine costs for policyholders or to deny coverage[1], however.
That fact alone is the reason I won't hand over my genetic data to a third party.
I agree, this is definitely something to worry about. The reason I brought it up wasn't to dismiss such worries, but to highlight the fact that even if someone isn't worried about the health insurance aspect today, they definitely should worry about how the collection of their genetic data could impact their ability to purchase other types of insurance.
While you may or may not have trust in the US government protecting your rights, there was a law passed years ago that somewhat addresses your concern.
For people glad that "crimes will be solved", must be noted that criminals could use it in their benefit also. Just submitting a strange DNA, from a deceased people for example, to be linked with their name. That would taint the database, make they invisible to computers searching (dead people don't commit crimes) and send the hounds far away eventually. If caught you can always blame the lab for mixing your data.
Looks like the modern equivalent to having a new identity after a fake new ID card.
When 23andme first started they were offering that a sample and your data could be destroyed whenever you liked. Then they got bought and their erasure document is a disgrace, their default position is they can't delete your genetic data and they don't say a thing about the sample at all. Those were not the terms under which it was collected.
There is a reason their business is failing and its because of this enormous change to their basic policy. What they have changed to is against the law in the EU and it is definitely not GDPR compliant despite the amount they say it is in their document.
I just sent in my spit last week and I thought they were very transparent about their data protections. They allow for you to delete your data and deny access by third parties, albeit they require 30 days to process any changes. I'm interested in learning more about my heritage, as well as contributing to genetics research. Maybe their terms have changed over time, but overall I found their explanations to be clear and thorough.
Actually neither. Family history with alcohol, burned out on coffee as a kid (would drink it at my grandparents' house pretty regularly), and sodas I kicked a couple years ago because it was starting to burn when drinking some of the stronger ones (my fault. Consumed it like it was water.)
But fair point, I didn't consider that when saying drugs. Meant more along the lines of drugs that work could come down on me for (marijuana and up. Personally, I think if alcohol and cigarettes are legal, so too should marijuana, but the legalization of it wouldn't change my non-use of it. Just seems a stupid prohibition to have within the context.).
Current, unaffected employee here. Throwaway for obvious reasons.
A big chunk of the layoff is the new lab that we built in Phoenix. That only made economic sense in the scenario where we were selling far more kits than we succeeded in selling.
The rest of the layoffs have a similar root cause: a massive overestimate of how much we were going to sell.
I'd blame the shortfall on some combination of growing privacy concerns from customers, failure to understand the demand elasticity as we cut back on discounts, maybe some slowing of consumer discretionary spending, and maybe saturating the market.
Ancestry.com has also stepped up its marketing game. Used to be a follower with DNA, now a leader, and discounting heavily.
And, unlike 23andMe which got rid of family tree tools used by genealogists, Ancestry still has a very strong suite of trees and traditional genealogy tools. Some people really want to have both genetic and traditional genealogy accounts under the same provider, and are either unaware or don't really care about the privacy concerns.
One thing I would add is the data for places outside of Europe looks pretty weak for both Ancestry.com and 23AndMe, at least it was the last time I looked. If you are from European descent they can practically tell you what village your ancestors are from (how accurate that is I don't know) but if you are Asian about the best you get is yep, you're Asian! I married into an Asian family and the reports I've seen from Asian family members are pretty disappointing compared to what I've seen from my family members (white, European descent). I imagine it's similar for some other non-white races too, that's a big demographic that's being missed.
Perhaps its changed since you looked because my fiancee is Latin American and her results tell her the provinces/areas of her home country where her extended family is originally from.
And competition - I purchased and ran a 23andme test ~10 years ago and it seemed magical that this was something that could be done. Now there are 3-5 others who do the same thing (at least in a consumer's eyes) and it's unclear what the uniqueness of 23andme is.
> Wojcicki has theories, but she doesn’t have clear proof for why consumers are shying away from getting tests
Because the ones that want them have gotten them and there's no reason to ever buy the product again once you've done it once.
I mean, smartphones are great, but the market for them would have hit a wall pretty quickly if no one ever had a reason to replace them after buying their first.
I mean, there's the fact that companies like this also provide your data to DNA databases that governments and other companies have access too. That seems like a good reason to shy away from getting their tests done.
Yeah, who know's what happens to the data after it leaves you. I know I seen on the news the military was advising against it, I guess if your DNA was leaked in a data breach someone could create viruses that target specific people, sounds far fetched like out of a science fiction movie though so not sure how realistic but I guess in theory it could happen. But ironically, many states like California collect newborn babies blood at the hospital after birth and stores them - even selling some samples to outside researchers, which is true if you look it up but if you tell people that they think you are some conspiracy theory tinfoil hat wearing nutcase instead of doing their own research rather they just attack you, not sure if parents are even aware. Looks like they are supposed to be informed, but the state isn't sure if that happens always by the doctors or nurses at the hospital. Wouldn't surprise me if it's just a small sign on the wall somewhere no one notices.
I have been wanting to though do one of those DNA tests but never got around to it since didn't want to spend the money right now and the whole privacy thing. I never knew my real dad, so I was kinda curious. Then on the other side of the family originally came from the South like Alabama or Tennessee and then before the US Germany but who knows if true just what I've been told by some family, but they very well could be wrong. I'm not sure how true or detailed those reports are either from these DNA test companies.
Smart phones also leak data. While you didn't mean this, I do think there's some sympathy here - the people that don't care about their data being out there because they 'have nothing to hide' probably feel the same way with their genetic data being out there.
23andME need to figure out a follow-on product to get the folks that have already taken the base test to purchase. Otherwise they have no new market to address.
I sent a saliva swab and got my dna analyzed by 23andme. I got back information I already knew such as where I came from etc.
Serious question. IF the government catches a relative of mine who is a rapist or a murderer from my dna, I don’t see anything wrong with it. Could someone please explain what could go wrong. Keeping our community from heinous criminals is a good thing isn’t?
ah, here we go. The notoriously flawed "I'm doing nothing wrong and I have nothing to hide" argument.
There are so many reasons why this is wrong and it is a pretty well known philosophical stance. A couple reasons:
- You assume that the government is acting for your best interest. What would happen if we elect a crazy president that changes the direction of the country? (Think WW2 Germany with their eugenics).
- You are not doing anything wrong but don't you have information that you want to keep private? Getting an STD for example is not illegal but I'm pretty sure you wouldn't like that medical information available after a search with your name on Google.
Yes, I did not think of laws that can change in the future. I will reach out to 23andme and request the deletion of my dna results and my account. I hope it works.
> Keeping our community from heinous criminals is a good thing isn’t?
Yes, but there certainly is a cost to doing that, and at some point the cost outweighs the benefits. If that weren't true, then the argument could be used to insist that every place, including every room in your home, should be subjected to government surveillance 24 hours a day.
Forensic genealogy isn't perfect. There are a few different kinds of DNA tests and comparisons, and some of those are better than others, and which one is used and how the DNA is collected and the interpretation of the results is still left up to human beings with badges, so it's still error-prone. This has led to people being wrongly accused, and even convicted, of serious crimes:
The problem here is that DNA evidence is currently considered infallible by law enforcement and jurors, so very nearly no amount of contradictory evidence will get you off the hook if a DNA test matches you to a cold case.
The police don't charge anyone based upon a 23andme test. They couldn't given that the typing done by 23andme and friends is an incomplete chip analyzed subset used for ancestry and some health tests.
If you took that 23andme test and uploaded it to GEDmatch, however, there are genetic genealogy experts who can figure out family trees, with which the police can narrow in somewhat to try to figure out who might fit a crime. Then they can ask you to volunteer a sample for comparison, or covertly get one.
It has been spectacularly successful. A lot of cold cases have been getting solved because of such analysis.
As to your list of URLs, I think people should actually read them. A guy had a trivial inconvenience after he had a familial match with a violent rape, and he met all of the other criteria (travel area, made a movie about a violent murder of a young female, etc). Then he was exonerated. He could have had more of an inconvenience if he simply had a car that looked slightly like a suspect vehicle, or the same hair style, but this is the example of overreach? Another is an absurd misuse of DNA in Taiwan that has zero applicability.
The final sentence is just nonsense. The DNA isn't even the lynchpin in most cases, the police instead building a case given that lead.
It's also worth noting that one of the greatest tools for exonerating people wrongly convicted is....DNA. Many people who unjustly spent decades behind bars are being freed based upon DNA.
That isn't really true though. You aren't some kind of clone of your parents. Imagine that both of your parents sit down at a table. Each one has 100 dominoes in front of them. Each parent will randomly take 50 of their dominoes and put them in the center of the table. Those are your 100 dominoes. It could be that your mother has 20 "scottish" dominoes, but not a single one of those dominoes are in the set given to you. You might look at your mother's dna results and say "I'm 20% scottish!" No you're not. You got zip from the scottish side of the family.
With 23 pairs of chromosomes we have 46 dominoes each (ignoring recombination.) This changes the odds of inheriting none of your mother's Scottish dominoes from 1 in a million (2^20) to 1 in 512 (2^9).
It's been a while since I've taken high school biology, but the odds should be the same as the mother. Scottish-ness is not something that's limited to the X or Y chromosome.
Mitochondrial DNA will only come from your mother, but I don't think we're talking about that here.
What if I don't give a shit about being "20% scottish" and only care about relatives-I-didn't-know-I-had and genetically-heritable-illnesses and my parents' reports were clean?
Half siblings are probably the most interesting “relatives-you-didn’t-know-you-had” you can find! They might show up at any time, and you wouldn’t know without having your own account.
It would still provide information about health, since you don't inherit all of your parents' alleles. (For example, if your parents are heterozygous for an allele and you'd like to know your status.)
23&me most like will not help you there as they are only looking for relatively well known mutations and not de-novos. They are basically scanning a few (or less) million variants but there are billions of possible new ones
23andme is pretty useless for getting great information from your DNA. I say this because you can get a much better report by exporting the raw data and then ordering a more detailed report from promethase.
Not just that, but when you read about them, they pretty much host their data on law enforcement hardware. Not that I think the Golden State Killer should be on the lam, but it's kind of concerning that a person with whom you share a great-grandparent with can put you in a police dragnet.
This keeps coming up by people who are seemingly confusing 23andme with GedMatch. They are very different platforms, and even the latter has greatly changed their law enforcement policies.
23andme requires a warrant. They publish a transparency report and since 2015 they've gotten a grand total of 7.
Having said that, if my DNA catches a distant relative who commits severe crimes, that hardly discourages me.
As an aside, what's with the bizarre moderation of HN lately? The circle of users allowed to downvote has gotten perhaps a little too big as the utilization for noting "this does not conform with my biases" has turned absolutely Reddit-like.
The parent post is wrong about 23andme -- it doesn't matter if you like the company or not, their point is wrong -- and the notion that you're caught up in a "dragnet" because of a far off ancestor committed a crime implies that you think the people who do genetic ancestry are idiots.
You may be technically correct, but the complaint is just a facet of the deeper (more real) issue: people want to own and control their data and they increasingly do not trust other parties. Even if 23&Me requires a warrant rather than a suppoena that's just nuance lost in a haze of "the customer is the product" exploitation that consumers hate yet feel forced to accept just like "click through" legalese.
> This keeps coming up by people who are seemingly confusing 23andme with GedMatch. They are very different platforms, and even the latter has greatly changed their law enforcement policies.
This confusion matters if the average customer is making decisions based on that info. It doesn't matter (yet?) that they require a warrant and are transparent. All that matters is that enough people believe 23andme will share personal data for sales to be affected
I would expect it to matter on HN. Facts matter. Increasingly people are just saying entirely wrong, easily disproven things and because it sounds right to whatever the bias of the crowd is, it's accepted.
However I doubt that angle has any relevance to their sales decline, beyond the most fringe element. As others have rightly said, the majority of people who have an interest in the information that 23andme offers have already done it or a competitor, having probably picked it up over one of the multiple Prime Days, etc. They do have revisions of their chip and improved information, but thus far they haven't marketed that for repurchases.
> you think the people who do genetic ancestry are idiots.
I've seen anonymous but redacted proof-bearing confessions from people these companies saying they "fuck with pure white people" by throwing in random ethnicities, so...at minimum, not all of them respect the integrity of their work.
Which shouldn't surprise anyone, due to...them being humans.
It sounds like you read an absurd fan fiction. The notion is absolutely ludicrous for a variety of reasons that are too boring to get into here, but it is absolutely remarkable the nonsense parroted about 23andme on HN.
Sad news for you endorphone: you're a 100% match for a serial killer based on the limited analysis and shoddy lab work that contaminated your 23andme sample. Here's a court order requiring you to submit a new sample to us. We're also going to need your passport so cancel that vacation you had planned.
This is somewhat of a misconception. The variants they test for change over time as new biologically significant SNPs and haplotypes are discovered.
One of the things that is a little misleading about how they present results is that a "negative" result means they don't know (i.e. not one of the SNPs they test for) rather than you have a "normal" copy of some particular gene.
> there's no reason to ever buy the product again once you've done it once
Actually I did it once about 10 years ago, and since then they've added a bunch of new diagnostic analyses they will perform, including a couple that are relevant to my family and I've been tempted to do it all again.
(although wait, do they need more saliva, or do they just re-run my existing sample?)
There's room for new products/features. They already offer a second more expensive tier that includes more medical related information. As they do more association tests and the like they'll probably be able to tell people more and more based on their dna.
Simple: they're not venture-backed so no one is expecting billions from them.
23andMe could be a longer-term sustainable business but taking $700m from investors means you must keep growing even if there's no really opportunity for growth.
driving schools likely have far more customers, a constant influx of customers based on age, and driving (in the US at least) is a necessity, and thus supplies the market. I'm also just spit-balling here: the cost of a tech company's upkeep is FAR MORE than that of a driving school's
The real risk in my mind is that this opens market space for Beijing-backed companies like Novogene in Sacramento. They will occupy that space and every adjacent space as fast as they can. They'll sequence your tumor genetics, or your germline to get a better read on you're kid's inherited disease. And you'll never know it because your doctor contracted with them, they signed a BAA (so it's all legal, right). And then Novogene will take that BAA to the bathroom, piss on it, and send your genome to China for cross-referencing in Face++ and see if you have any Uigher in you.
Everyone will eventually get some amount of sequencing done, probably multiple times throughout their lives. The vastly more important question in my mind is who's going to do it, and what are their incentives?
With cost-conscious medical professionals, you can bet it will be the lowest bidder, and the lowest bidder will not have your best interests in mind.
This wild, unfounded fantasy completely misses the point: genetic privacy is fundamentally unlike other types of private information. It is trivially easy for someone to collect your genetic information if they really want to, completely legally and without your consent. They could, for example, obtain bits of the multitude of genetic material you spread around your environment simply by existing -- chewing gum, hair, cigarette butts, poop. Or, just look at a few close relatives of yours who overshared everything on some online database. And these are just the obvious ways.
The ways in which this data can be abused (eg. prescreening for insurance, loans, etc.) doesn't line up with someone going out and hunting identifiable DNA samples to build a database. It does line up with self submitted/self funded database - you are basically paying to get in a DB that can be used to discriminate against you - it almost seems comical
As someone said in a comment above, blood samples of all people born in CA (and probably in many other locations) are stored centrally, so there is a non-zero chance their DNA info is leaking to foreign databases. I highly recommend to watch "yt! How to Survive the 21st Century Davos 2020". Harari makes very important statements related to this discussion.
this is why there needs to be laws about using and transferring information about you (biological or not). Regulation, and transparency prevents abuses.
If your sample was tested for trace genetic traits you didn't ask for, you have avenues to pursue if laws exists, but right now no such avenues are available.
This "China = boogeyman" has become very common on HN and I'm surprised it's rarely called out for the xenophobia it represents. For most of the rest of the world, the US is not much more trustworthy than China, but Americans generally frame it as if control is transferring from some guardian angel to a horned devil.
I'm well aware of the horrors of the Chinese govt, but it's always talked about here as if a fresh new threat has appeared, rather than the source changing from West to East.
I did this almost 8 years ago for the health insights and recommended it to a few dozen friends and family because the UI was nice, they added new reports, and they were the only low cost provider at the time that let me export my data. I loved the service and found an unknown sibling through the site.
The FDA made them remove health insights so that made the service less useful.
But two years ago they started selling data to pharmaceuticals. They claim it is opt in, but I have a hard time believing them. And they prompt me to opt in about once a month. I no longer recommend.
> The FDA made them remove health insights so that made the service less useful.
This is like saying a medical product is less useful because the FDA made it remove horoscopes.
If the health insights aren't proven to be accurate, they aren't either safe or useful.
My ex is a quantitative geneticist and always said that we know almost nothing about genetics, and these companies are vastly inflating the certainty anyone has about their conclusions.
Not really, what they did is basically summarize all the various research related to genes. It was mildly useful, but more so as just a way to easily have some surveillance as new research came out.
You may argue that it’s not useful, but saying it’s not safe is hyperbole as there is no evidence of danger or misuse and there’s been like 10-15 years for horror stories to come up.
I would like some way to automate my scanning of research for genes related to me. 23andme sort of does this again, but for years they didn’t.
Any test that leads to unnecessary treatment is unsafe. That list typically includes anything with false positives. For example, excessive testing for certain cancers (like breast cancer) lead to higher death rates.
Here's a concrete example where poorly-understood genetic testing has led to unnecessary surgery, which is obviously not safe.
> Any test that leads to unnecessary treatment is unsafe.
The AMA argues against letting patients run their own lab tests too, and fortunately lost. While it is possible that people could make mistakes using their own data, but this is rare and certainly the data being available is a net positive for people.
Using your definition, wouldn’t it be more dangerous to only make the information available to rich people and prevent the information being available affordable? $100 for webmd is much cheaper than the tens of thousands it would cost to consult with specialists, counselors, and gps.
We need to look for ways to lower healthcare costs, not scare people about hypothetical dangers that just happen to be solved by very expensive tests and consults.
> The FDA made them remove health insights so that made the service less useful.
I believe there are third-party sites that will still give you this information if you upload your raw data. Though of course, this has the downside of giving yet another party access to your data.
The 3rd party sites I've used don't ask for any identifying information though (unless you want to pay for paid features), it wouldn't surprise me if there were simply downloaded freeware that you could use to do it offline on a virtual machine if you even wanted.
A quick Google query leads me to this
>I recently wrote a small tool, Snappy, that can help you browse and interpret your raw data. Written in JavaScript, all processing is done on your browser, without transmitting sensitive data to any server. That also enables the tool to be used offline
I’m curious for the reasoning behind why selling the data to big pharma is a bad thing? I was thrilled to hear about that personally as I am very supportive of large pools of genetic data being harnessed for drug research. Big pharma has big money and lots of smart folks, if they can leverage 23&me’s data to create better drugs or find the root cause behind diseases, it seems like a win to me.
That said, I hope that we pass stronger laws protecting genetic data from being used for any type of insurance. Genetics =/= genetic expression, and the law should reflect that.
I don’t like my data used without consent. I don’t like my data passing through extra companies forever and dna is or will be always identifiable since it’s like, my dna.
I also don’t like the idea of companies making money off my data without compensating me.
They sold 10M kits, and they primarily market in the US. DNA never changes, so you have a lifetime max of 1 purchase of 23andMe per lifetime. Their competitors have likely sold 15-30M as well, so maybe 30-40M of these kits have been sold. That's 10% of US market.
It occurs to me that they could have followed the software trend where everything is a subscription service. As more is learned from the genome, they can deliver more value to the customers over time.
Yeah, it seems like a major mistake to sell this as a one-time purchase. Market it as "genetic monitoring" Charge
a monthly or yearly fee to keep getting new genetic insights as research discovers the function of more mutations. Offer upsell re-tests with more complete or accurate sequencing.
I think they must have been banking on the data-set itself being highly valuable and made the tests cheap, then ran out of customers on both ends of the equation.
I believe they actually did have it as a subscription model at one point (I think it was at a time that it was a choice of either $400 one-time, or $99 for the kit + extra for the subscription), but I guess they have more competition now, plus it's cheaper?
It's a bit of novelty act right now. Like I know pretty well what my ancestry is and it isn't terribly relevant to my daily life as-is. If these guys told me I was actually part Cherokee or something unexpected, I'd shrug and continue doing what I'm doing.
Your germ line genome rarely changes. Your exome changes all the time. Your gut biome changes all the time. There's massive market opportunity but a ton of regulations around how to tap into that market opportunity.
On a separate note, Ancestry is going through a similar issue. They've had double digit revenue declines in their DNA testing suite. The truth around 23andMe and Ancestry is that they're really doing a super shallow sequencing and, I believe, are doing only genotyping. It's not super interesting in the long run because it's such a static dataset. Getting to exomic or metabolic/gut biome sequencing provides much more interesting insights into the human body.
Several things are wrong with this post. The exome is the protein coding portion of the genome. It does not change except by somatic mutation, same as the rest of the genome. Genotyping is the act of decoding variants in a genome and does not have anything to do with the underlying technology used. To my knowledge both ancestry and 23andme still rely on microarrays to do genotyping, though 23andme experimented with whole exome sequencing (which is not low coverage) in the past.
How complete are theses tests? If I wait another 10, 15 years to get sequenced, would I get more accurate, reliable information? Can advances in sequencing technology make it worth people to get resampled? Or is it just an issue of better analysis?
The technology itself is constantly improving, for instance the push towards long read technologies. Beyond the underlying sequencing, the computational pipelines run on the output from the sequencers is also constantly improving. A huge issue at the moment is in that space, as key portions of the alignment and calling pieces of those pipelines are not optimized for a global population.
Couple of professor's and top researchers are stated that the tests are accurate as a horoscope.
I also did a "highly respected testing using thousands of studies" 650$ testing which, well... I can guess the same stuff by looking at someone or two seconds.
> If I wait another 10, 15 years to get sequenced, would I get more accurate, reliable information?
If you're asking about the DNA data itself? Yes, absolutely. The underlying sequencing technology is advancing every year.
If you're asking about the value-added informational inferences sold to consumers? I wouldn't put much faith in that, but I'm also a cynic when it comes to computers and business relationships with consumers.
@mathnerd314's comment [0] is correct, current DNA analysis products frequently produce conflicting results [1]. I've seen the software side for why that can happen. The technology is extremely complicated and sometimes convoluted. And there are many "standards" (xkcd-style [2]) for reporting even more ad-hoc features. Big companies can't even get basic web services to work right 100% of the time, what makes you think DNA analysis software can do that?
There's a lot of math which goes into consumer DNA products. The math involves a lot of statistics and population information. The math can be biased towards or against particular people. And it's usually hidden behind closed-source algorithms and proprietary information. Do you trust that?
I strongly think this is an area where international standards organizations should come into play and where laws should be put in place to govern data correctness, responsibility, and culpability. The NIH is doing some work towards that end (eg, precisionFDA challenges) but it's doing a lot more science-related work instead of consumer-related work IMO. As-is, consumer sequencing analysis products (especially in the United States) are in the wild west.
Without strong standards and laws I don't think you're guaranteed to get more accurate or reliable information in 10 to 15 years. You'll get the same kind of information you can get today, but perhaps cheaper.
> Can advances in sequencing technology make it worth people to get resampled?
Yes. The sequencing products that I have worked on have gone through multiple generations during my (so far) six years of employment in the industry. Each product's generation changes the sequencing technology itself, the analysis product, or sometimes even both.
> Or is it just an issue of better analysis?
Current technology has a lot of trouble sequencing completely through a full strand of DNA. If you can solve that then analysis will instantly get better. To get around that, there are many different types of sequencing available.
The micro-array that's used by most consumer companies focuses on hundreds of thousands of single-basepair locations and do so quite affordably at industrial scale. If you have any sort of unique variation at one of the targeted locations then micro-array sequencing technology will likely have trouble getting data about that location. But en mass, one data point isn't enough to throw off your results.
Another type of sequencing works with chunks of DNA - partial strands - but sequencing quality goes down with the length of the chunk. One chromosome will have millions of basepairs split into thousands of chunks but the maximum length of the chunks for usable data is measured in hundreds or maybe thousands of basepairs. To help solve that, the sequencing technology will make many hundreds of duplicates of those chunks and sequence all of them simultaneously in a massive parallel operation. Even though the sequencing itself is slow, the parallel part makes it high throughput. Then the low quality of each individual read is offset by high numbers of copies and reassembly is just a (very) computationally expensive task.
If you can improve the quality delta across a DNA fragment, particularly to the millions of basepair lengths, then that would be a game-changing breakthrough, especially if you can keep throughput high. I intuitively know it's possible: your own cells copy your DNA every time cell division occurs, and they do it extremely fast compared to current sequencing technology. I'm just a software dude though.
There are other sequencing technologies which I've not worked on and can't comment about.
Your exome is a subset of your genome. It does not change. That said, the cheap DNA kits do not test your entire exome, so there will be a market for these once they are able to do so.
Exome could plausibly change due to alternative splicing, but my guess is that what is meant here is transcriptome, which is which genes are actually transcribed and their quantities.
Unfortunately RNA is chemically unstable. Not sure if cDNA synthesis could be done with a consumer kit.
Gut biome population sequencing/gene panels probably easier to get.
"If your data are associated with your identity, they may be made public or released to insurance companies, which could have a negative effect on your ability to obtain insurance coverage."
This is about data breach but within, they acknowlidge the potential usability of those data for insurance bussiness. I wonder who would buy them if they go down...
I just wonder what happens to everyone's DNA data as the company faces financial trouble and/or sells itself. That's in addition to any concerns about possible security breaches that might occur.
Enough people have had their awkward family gatherings after trying to have fun with a novelty gift.
Enough people have watched others mess up otherwise cohesive family structures over what was supposed to be a novelty toy.
Enough people have watched the availability for genetic information to go to law enforcement. And that maybe they don't need your specific information to use that effectively, so why give more whether you agree with it or disagree with it.
And the uncertainty of this information being stored in perpetuity, available to the highest bidder.
Maybe the industry as a whole should stop handing stuff over to law enforcement and governments.
I was going to buy it for 2 different people for christmas but both declined over privacy concerns as they read in the news they are being used in sweeping investigations. Given the number of wrongful accusations that litter history and the general trend away from any regard for privacy among security agencies this is a very legitimate concern, even for regular folks like my parents.
> Maybe the industry as a whole should stop handing stuff over to law enforcement and governments.
They can try saying "No", then the government will just get a court order to force them to do it. They don't really have a choice in the end – the only choice they have is whether they make it easy for the government ("you want our data? here have it!") or slightly harder ("I'll need to see a warrant first..." "No problem, we are going to the magistrate right now to get one...")
The companies like 23andMe can do anonymous tests. They can even sell "gift cards" for cash (or bitcoin, for digitally inclined). Don't deliver kits, let them be picked up without asking for an ID, just by the gift card number. As long as the test results are not linked to a specific address or name, it's fine.
They will still have clues about the state and the city and the IP address of the person. It's enough to do whatever research they may want to do with aggregate data. It's not good enough to sell this data to insurance companies and advertisers.
Companies could stop retaining data that governments would be interested in. I'd love to get my genome sequenced, but I never want that data to be retained by anyone but me.
I did it and then regretted it. Possible outcomes:
You risk getting linked to a crime because your DNA was found at the scene of the crime. You might even be innocent, but just having your DNA in a database increases your risk of a false conviction. Worse, you put your relatives at risk too, regardless of whether they are guilty or not.
Maybe you unknowingly got someone pregnant and now owe child support. Depending on your situation, you may not welcome this discovery.
Best case, you find out that you have a genetic disease that you can't do much about.
when they started, you could get your results anonymously. I recommended several friends to try. Then they changed that policy...at which point I stopped recommending it.
I'm not saying this is the cause, but they had a chance to be good guys and decided against it.
And there's basically zero overlap between 23andMe's test method and the clinically useful tests that a doctor would order.
For example, carrier screening, to see if you and your partner both carry recessive variants that may result in a rare genetic disease in some of your children: impossible with 23andMe's setup, but useful to a huge number of couples, and already common practice for some ethnic groups.
This was way more appealing to me when they were able to provide (probably spurious) medical predictions, and before it was clear that the ancient ancestry assessments were so much guesswork.
The cost of sequencing keeps rapidly halving, but the price of kits isn't really dropping, so over time it seems like less and less of a good value.
They're clearly spending on social features and development, which is understandable, but it'd be interesting to see an alternate universe firm just dedicated to making sequencing as accessible a commodity as possible--send in butterflies or dog hair or sushi and we'll send you a genome.
Might create interesting opportunities for amateur biology, similar to how popular amateur astronomy has become with home telescopes and ability to search Hubble images and such.
Almost any other sensitive data (passwords, bank accounts, etc.) can be changed with enough effort, but your genetics can't.
Even if you think 23&Me is operating ethically today or that you trust the laws protecting your privacy once your genetic data is leaked there's nothing you can do about it.
I happily share my income and net worth figures online, post here and everywhere using my real name, and I’m even doing a podcast now sharing all the gory details of going through fertility treatment from the male perspective.
There’s no way in the world I would allow a company, or any other person or entity, to voluntarily have my DNA.
If it could be bought somewhere with only a big QR code one it and prepaid stamped envelope, I might buy it abroad, spit into it, seal it, send it and check results over Tor later.
you can buy it on Amazon or I also saw the kits at Target - pay with cash if extra paranoid.
use a vpn, don't give your real name or real address. it's some work but it's doable if you want to.
Probably a good thing. Since they started cooperating with law enforcement, it's basically a giant exercise is entrapment with a little psudo science to help sell it...
> The company raised ample venture capital -- $786 million, according to Crunchbase
If I might go on a tangent, isn't that an insane amount of money for the VCs to hand out? Apple with a $1 trillion market capitalization (the most valuable company on Earth until Saudi Aramco beat the record a month ago) began with $1M in inflation-adjusted venture funding in 1977.
Is there any way that $786M makes sense or is there just too much VC money sloshing around?
I'm gonna give you some slack here, Anne, but TBH Silicon Valley executives don't really understand what these words mean.
“I think the tech world needs to own this[sic] better communicate privacy standards to build trust,” she said. “I want to jump in and really own it.”
Or maybe instead of jumping in with your billionaire executive pants on, Anne, you could listen. People are sick of being told what's being done to them. You didn't miscommunicate, you screwed up. People are pissed off.
I have a theory for her. It's too expensive. It was really cheap when I got it (on deep discount) but there are discounts, and then there are discounts. The discounts in the last few years have been very weak.
For the past few years I would have bought it for as many as five family members if only it had gone back to the price I got it for.
And now that the privacy concerns have understandably scared everyone, maybe privacy has overtaken that theory. But the prices are still too high for the value offered.
I saw one of the kits on sale in Rite-Aid the other day, and I looked at it, and it was only like $35 dollars. That's down in the "sure, what the hell, maybe it'd be interesting" range. Then I looked closer, and realized that in the fine print that was just for the testing kit. When you send it in and get it processed, there was an additional $99-150ish lab processing fee, depending on what you picked, to actually get the results back. A little rich for my blood at that price.
None of these are likely the result of systemic factors. If anything, there being layoffs at some firms without it impacting general employment levels is a sign of a healthy and balanced economy.
There are weird indicators of recession in segments of the economy already. But new monetary policy is containing the problems so far.
Predicting recessions is a losers game though. In that the large majority of predictions are wrong but eventually a recession happens. Most people's predictions are based on bad analyses.
Yep, depends on the state though. Can also affect your insurance rates too such as car insurance, not sure if other types of insurance use it as an indicator but wouldn't surprise me.
You're going to have to prove there's a pattern here. Unless the pattern is companies that haven't maintained their status in their respective industries.
> Pay down your credit card debt and make sure you have at least 6 months of expenses in the bank, if you're young and haven't been through this before.
If you think you're about to get sacked, the last thing to do is pay down debt regardless of the interest rate.
If you're about to get sacked, I'd recommend opening a home equity line of credit. You can live off this while you plot your next move.
People's heads are in the clouds again, ala 1999 and 2008. You can't believe people are delivering anything more than hopes and dreams unless you lay eyes on said product. Most these startups sell hype and vaporware, but people get starry-eyed over them and turn into Phil "Take My Money" Fry. Cynicism isn't a bad thing when it comes to money.
Also, there have been a few rather defensive sounding VC posts on HN lately. Usually it's all Techbro Tony Robbins platitudinal stuff, but it's been getting darker these days. Did you see the one with Paul Graham lashing out at "haters" or whatever? Yikes. Gives a sense things aren't going that well, and they want to justify their decisions.
Moreover, I'm getting less recruiter spam on LinkedIn, but to be fair half of that was just WeWork.
I was very close to buying this a few years ago and I decided against it. Then later it was revealed that these companies give away and sell your data... How surprising. Now I'm too creeped out to care.
My company has some workplace goals, that if you complete them, you can have some extra time off. Usually they involve taking care of your body and participation is tracked by the honor system.
A recent one had a requirement that was a DNA test "to learn about your heritage." There was an opt out, which I took for privacy reasons. I'm amazed people are just starting to realize the implications of giving away your DNA to be collected in a central database.
I regret doing my 23andMe testing. I stopped trusting them when I realized how easy it would be for bad actors to abuse the system. I wish I could take it back and have them destroy the records and DNA sample but they literally won't let people do that (for some completely bullshit "legal" reason that makes no sense and is clearly a lie).
Where I work in the healthcare area, we are trying to expand from the us into Europe. And interesting legal question is how to honor Europe's right-to-be-forgotten laws with the US's HIPPA requirement to preserve health care data for X years. As an employee it also feels awkward.
That's what they get for only allowing people to pay their way into their ecosystem via a test kit.
Their service would much more useful if they had a larger database of people, but only so many people that have already done a kit through Ancestry DNA are willing to pay for yet another DNA kit through 23andMe to get access to their database of people,a s they already have access to Ancestry's larger database.
More or less 23andMe is starting to hit saturation and need to build their database more if they want to increase usage of their service, get more time on site, and thereby draw existing users towards their current and future monetized offerings. There was one time in there history that they allowed you to import your DNA data for free from other services, but they shut that down long ago.
They are going to face more competition in their once-unique area of DNA health data, as Promethease was just acquired by MyHeritage.
Very curious that this came just a couple weeks after they announced licensing their first drug compound (using data from the test kits?) to the Spanish firm Almirall [0,1].
Anybody have any ideas about this? Why would they slow down the "growth and scaling efforts" (as the cnbc article claims) even despite lower-than expected sales, when the data from kits is what gives them the unique(?) capability to discover novel drug compounds at a massively reduced cost compared to traditional pharma companies.
Bringing drugs to market requires a lot of money. And the whole process takes a long time (order of a decade).
Subsidizing the tests or doing more marketing would sell more tests, but wouldn't speed up drug development. And doing so would burn up money that could be used for drug development.
And even though the licensing deal is promising, there has been no drug brought to market yet based on 23andMe's data. So it's a hard sell to investors.
I received Ancestry DNA as a gift this year and have no desire to use it.
After reading the terms and conditions, I was amazed by how much they can share or resell the data. Beyond the privacy issue, I'm also not sure how much these services can add value to my life. Either knowing or not knowing where some of my 2^n ancestors (n being generations from me) are potentially (based on proxy information, not certain) originating from doesn't seem to do much for me.
Also, knowing health risks also doesn't do a whole lot for me as I already live a healthy life with the idea that living healthily will add years to my life. Do I want to know I'm predisposed to some disease in the future? Not really. Unless there are DNA-tailored pills you can take that reverse any potential DNA-driven issues coming my way, I'd rather not know.
Does anyone feel differently? Are they getting value from these services?
After a woman reached out to me on Facebook last Father's Day I took the 23andme test. Yes I had a new to me baby sister!
She found me after taking the test herself looking for her (our) paternal linneage. A not too distant common relative did the 23andme too and a little detective work in online obituaries was all she needed to find me. Strangest FB message I have gotten to date. I thought she was a cybersecurity recruiter as I noticed she was looking at my LinkedIn profile a few days prior to contact.
I used to be more concerned about the privacy implications. Maybe it's my age or something but I feel at peace with my choice. Besides I realized once one somewhat close relative is in the database it takes very little to link us all up.
Was it worth it all things considered? For me it was though without the desire to confirm our relationship I probably wouldn't have done it.
> I feel like 23&me is literally only useful/interesting to white people because they can see which one of the 50 European countries they have ties to.
I'm not familiar with the kinds of ancestry information they can provide, but why would that only apply to white people? Why not also, say, people with African heritage and which of the African countries they have ties to?
As a 3rd generation white person in the US, what specific European ancestry I have is meaningless to me.
I find the health tests to be more interesting than the ancestry, though it was a bit scary though having to click through all the warnings to get to the results.
It probably would have been different, based on other stories of twins that have been on hackernews or siblings in other news reports (the % ethnic background should be considered a guestimate)
https://news.ycombinator.com/item?id=18938750
Surprised they haven't expanded the offering to include regular blood panels and "doctor's recommendations" (subscription revenue). Hell, you could even do a "improve your bloodline" service that plainly explains how doing a, b, and c will help with that and set you on a life plan w/ decade-level health targets.
I'd have to imagine a well-packaged, boutique option for getting that done would be huge (and they'd have most of the infrastructure and relationships to do it). If it was affordable I'd buy it.
I was interested in DNA analysis until I realized that doing so meant giving my info to law enforcement and to all the world's corporations who would use that info against my interests, and it couldn't be undone.
I would probably still be interested if there were a company that promised never to share ANYTHING with anybody and to destroy every trace of my info and sample within 90 days. But that company isn't 23andme, for sure.
I’m surprised that 23andMe have not released any new products since they started. They still offer the same SNP chip based test fundamentally. The interpretation of results has if anything become less interesting due to regulation.
It may be that there aren’t any new products that are either useful or that people want. But still, it highlights the type of company they want to be, a kind of genomics facebook.
Are there any similar tests but focused on privacy ? No online database entry, just your plain raw data. Use your own software or local statical models to look for pre-conditions, etc. No looking for family members, unless I want to upload my data to some website, and then be able to have it removed at any time.
It kills me to think that they don't realize that their business is a fad and like all fads they fizzle out. couple with the fact that i'm almost certain they will share their information with anyone who is willing to pay them for it and you've got yourself a sinking ship.
No, just crap companies that you don't really need. Companies that have products with actual users rather than novelty items or pure convenience will be around for a long long time because they are profitable.
While it's more pronounced in tech, it's not just tech. Lots of old economy companies tightening their belts as well based on anecdotal stories I've been hearing in the last year.
Saw an analysis of game sales on Steam for 2019 recently. Way, way down compared to 2018. Yeah, sure, it could be everybody is busy working, but it didn't look good.
This DNA testing stuff intrigues me but there’s too much shady stuff going on with the data afterwards for me to want to give it a go. A lot of this “consumer grade” DNA testing may go down in history as a great product foiled by doing shortsighted dumb stuff with people’s data.
The ultimate solution to privacy concerns is home sequencing machines. When we can sequence our own DNA, we can upload it anonymously and get many of the benefits. The one thing that wouldn't work is finding lost relatives by name. Maybe general location, though.
Be forthcoming and willing to establish win-win relationship with me instead of sneaking out my stuff and monetizing my stuff without disclosing what are you doing with my stuff and without compensating me.
Well, there are only so many people interested in the product (ie. not creeped by it), and they're only going to use it once...
2010s will be remember as the "wonky startup" decade, between this, theranos, uber &co.
The genetic predisposition stuff has been underwhelming. I'm going to just make up an example, so keep in mind that I openly told you this is made up. Basically they put things in alarming terms. For example, after clicking through some confirmations that you are OK with learning the information, you might encounter things like: "You have an elevated predisposition to Snooferitis, with a 50% higher risk than average." And 50% sounds really scary, the way they put it. Then when you drill into it you see that the general population has a 0.2% risk of developing Snooferitis, and your risk is 0.3%, so that is, wow, elevated.
ymmv. There are definitely cases where things are more cut and dry (and possibly very not good) and sometimes the click-through confirmations about wanting to learn the information are seriously justified. But a lot of the elevated risk information just feels like fluff.
Did anyone learn anything meaningful from these tests?
I saw some results, for example, "I'm 3% Syrian, 10% Portugal, 8% Korean ...." etc., but do they provide more important results like "Sorry, you will have cancer in 2 years"?
yes + you can actually download the raw data and analyze it with a couple of other online tools (e.g. https://www.promethease.com). It may be worth it especially if you have a rare disease - but you'll have to be the judge of that
This is a functionality that no one asked for. Why does one need them? Let me ask an extreme question, how different is this from me naming a star after someone for their birthday? I go to some site and print out a certificate that that particular star in a given galaxy is now named Michael. Point is its a novelty thing. If a doctor asks me to get it done for a medical reason, sure. Other wise this is just a curiosity with no use.
Also, one way to look at it is we are paying to make our DNAs sellable to third parties. These have value for a long long time and the company is going to make money on that for ever. Sure there will "anonymization" of the DNA or some other privacy blurb used but we all know it will be sold.
Small sample size, but I was adopted and didn't know my genetic background or have any family medical history. When I've been ill I hadn't been able to provide that medical information when the doctors requested it.
Thanks to 23andMe I not only know a lot more about myself, but I also found my biological parents who are married to each other and wonderful, and who have two twin sons. So suddenly I have a second set of parents, two full brothers, and three more nieces and nephews and they're all incredibly welcoming, great people who I visit often.
23andMe is very open about selling people's data! More people are OK with this than you would think. And without those data sales to third parties, 23andMe would look very different. I hear (rumors only) that their customer acquisition cost is a large percentage of the kit cost, and what's left over could in no way cover running the SNP chip.
The 23andMe SNP chip is not very medically useful, and I can't imagine a doctor recommending anyone use 23andMe unless it's to find relatives to relieve stress about the matter. Doctors will order specialized tests from clinically vetted firms that have medical directors signing reports that put their medical licenses on the line.
All that said, giving people access to their own data is somewhat valuable; and when the company was started no one knew how valuable it would be. Turns out it's mostly only useful for genealogy, at the moment, and unlikely to be useful for much more to individuals.
What people really want to know can not be answered by these tests, for example, what foods a person should eat, how long they will live, what they need to do in order to finally find bliss, etc... There are a several tiny, shady, providers of this information that is in high demand by some consumers, but short supply from the science.
Hang on, haven’t they just signed a deal with a drug company worth $$$? You’d think there would be hundreds of ways to monetise the types of people who have signed up for their platform...
Competition + Novelty Factor Decline + Privacy Concerns + Not that much benefit + DNA doesn't change so no need to test more than once: Hard upper limit in sales.
Wasn't the cost of sequencing supposed to be decreasing exponentially, so we'd be able to purchase a home sequencer by now, that doesn't sell your dna.
That’s what happens when bad press about your company comes out, and you’re too clueless to recognize it.
Why do I really care about other people with similar genetics to me?
This seems to be a greater risk for me, if I put myself into that database.
And if someone else has a similar genetic as mine, and they commit a crime, then I’m automatically roped in as well. Do I really want the police knocking down my door, and slamming me to the ground, while they barge into my house with assault rifles and ballistic protection gear, and pointing their guns at every member of my family. This is a case of mistaken identity. But their m.o. is to shoot first, and ask questions later. No thanks!
This is the Law of Unintended Consequences at play here.
And for all the talk about cross linking your genome with others to find markers to get clues on how to cure diseases, well, I never really bought into that.
It may help, but I really don’t care. The disease problem will need to be solved in another way, that doesn’t involve the compromise of my security, however remote it may be.
I think most ordinary consumers like your mom and dad don't care about privacy.
I know at least two DNA companies that send your data to China for processing and yet nobody cares.
So it may not be the reason of 23andme's problems - it might be just that the market is saturated. People who wanted to take the test, like me, already did it.
I disagree. My parents paid to not have their names and phone number listed in the white pages. So they cared about some semblance of privacy, as it existed back then.
This age of Google and search engines, where anything and everything is captured digitally, and will last forever, is creepy as fuck.
It’s no longer even about your social media profile anymore. Or of the curated pictures that you post online to share with your friends. It’s all about your browsing history now. Your clicks, your mouse movements, your GPS location, your iPhone battery meter, your voice as you wake up. Everything, just to build some profile on you, either now, or in the future, because that data is all there, just waiting to be harvested.
This dystopian nightmare that we now live in, is like some prison that we are born into, and which we don’t even know exists. It’s all around us, and monitoring us, and continuously profiling us.
And it has one and only one goal: To turn us into a penny.
>I think most ordinary consumers like your mom and dad don't care about privacy.
I don't care about most privacy. Will I put a bunch of cameras inside my residence, no. Beyond that I don't much care I mean I use RyanMercer everywhere (here, reddit, forums, social media) and even own 3 of the TLDs which all point to my blog that goes back nearly 20 years to high school where I said some crazy stuff that most people would wish scrubbed from record entirely but I leave them there because that's who I was 19 years ago, 18 years ago, 15 years ago, 10 years ago, last year.
There are 7.53 billion people, no one's singling me out trying to target me for something I said 20 years ago or for some gene I have that may or may not be expressed or for what YouTube video I liked in 2014.
Employers, and potential employers, know my credit history. I have a public bankruptcy. My address is public record as is the LLC I controlled and ultimately dissolved. If someone wants to know I Googled "has anyone microwaved an elephant" or "how many golf balls will fit in your large intestine" then I simply don't care.
It's public record my father died of cancer, it's public record his mother died of cancer, my mother has publicly shared she had cancer. I don't feel bad publicly talking about my alcoholism because I'm sure some record has been sold that my father was in inpatient treatment for his and his father had a DUI (as do 2 of my uncles I believe).
Don't watch me shower, don't watch me sleep, don't watch me have sex, don't watch me use the toiler and that's about all the privacy I worry about.
If you don't like me because of my bankruptcy, alcoholism, drug use as a teen, religious beliefs, my review of some movie from the mid 90's, then that's your problem not mine and if you want to preclude me from this or that because of it then good I don't want anything to do with you or your company/service/product.
And if someone kills every memeber of your family, and they leave DNA behind, but police are not allowed to use DNA databases which WOULD find the person that commited the crime and they don't have a match otherwise (since we're already making assumptions that something will definitely happen)?
I mean this goes both ways. One thing I don't understand about this whole hate for DNA databases and matching relative's DNA on HN is... why?
Why does something that can help police catch criminals is such a bad thing? Because there are false positives? But those exist in pretty much all other investigation techniques. Cell phone positions, being seen on a surveillance camera few blocks away, having a similar car and being in the area, etc. Why is DNA so much worse?
In fact wouldn't adding more variables, such as DNA, to the existing techniques reduce the number of false positives as in "Oh yeah it's the same car, but there's 0% DNA similarity so no need to investigate further"?
Police "barging into your house with assault rifles and ballistic protection gear, and pointing guns at all members of your family" seems extremely overkill for a, let's say, 10% DNA match. And if they do really do that, then it's a problem with a police that needs to be addressed - not the DNA databases.
An ounce of prevention is worth a pound of cure. Better to prevent the emergence of corrupt and unjust institutions, than to try to reform or dismantle them after they have been formed. Institutions have inertia - once they reach a certain size and state, any change is difficult.
I want policing via consent. A police force that through diligent investigation comes to suspect someone of a crime and then acts on it. Let scene of crime DNA assist in showing a relation, or that the suspect may be male etc.
Yet a DNA database to trawl is the wrong answer. DNA is not a 100% unique match, it might not even be unique among everyone alive right now. It can degrade, techniques for amplifying very small samples are highly delicate and easily corrupted. DNA evidence at trial achieves that same undeserved halo effect as polygraph as the non-mathematical public and jurors don't understand any percentage confidences. It is far, far more influential than it deserves to be, even though unlike polygraph it has a real factual basis.
It should be one of multiple sources of evidence sought at trial, and should be barred from being sole grounds to convict.
A DNA and fingerprint database of convicted felons, accessible only to police and ports seems a reasonable compromise. A database of the innocent and not yet proven guilty? Fuck right off.
Because MY DNA is MY DATA. MINE! I own it, so I can do whatever I want with it, including not giving it to some weird company or whoever. Is that so hard to understand?
It's not me who needs a very, very good justification (and no, hypothetical criminal-catching doesn't cut it, because you'd have to prove me being a criminal first) to keep that data to myself, it's anyone else who wants to make use of it who needs a very good justification for that, ideally one that doesn't just depend on brute external force to "convince" me of consenting to someone else utilizing that data.
> And if they do really do that, then it's a problem with a police that needs to be addressed - not the DNA databases.
I think the reasoning should go the other way: given that we know there are problems with the police that need to be addressed, we shouldn't have DNA databases until they are.
> Why does something that can help police catch criminals is such a bad thing?
Because that's not the only thing a DNA database can be used for, and "criminal" is a word whose meaning changes all the time.
People all over the world are being incarcerated right now for being born in the "wrong" race. DNA databases would make this much worse.
also, the value you get out of it seemed to be mostly curiosity and novelty. Getting a bunch of stats on your heritage is nice and all but it's not any sort of ground-breaking consumer service.
They could charge you a monthly fee to keep you up to date on discoveries in this field relating to your personal DNA? (not sure how often this actually happens....)
Their existing data can't really be used for personalized medicine. If they want to pursue that market they'll need different testing protocols and additional regulatory approvals.
The largest chunk, $300 million, was a buy-in from GlaxoSmithKline, with which it purchased access to the database and research.
Given the slowing pace of drug development, that was probably a very good "investment" by GSK. But maybe it was a bad one for 23andMe if it limits the scope of deals they can do with other pharmaceutical companies.
It remains unclear that 23&Me's data will truly be transformative in drug development (this has been a criticism of the human genome project since it finished and most predictions for human health still haven't panned out). There's a lot of narrative and noise there, but not a lot of useful activity (yes, I know 23&Me is touting one drug at this point).
On the last big 23andMe thread at least one researcher commented that their data has been immensely useful. And I'm fairly certain I've read a few similar comments on HN before then.
A researcher friend of mine made fun of me for signing up to 23andMe when they first offered their test. SNPs, he told me, didn't tell you much of substance. To which I replied, haven't the last 20 years (almost 30, now) of genetic research been built almost entirely on SNP-based studies? He didn't have a comeback for that--he was in the middle of his Ph.D at the time. A few years later he signed up for 23andMe =)
It's true: we're so incredibly far from the type of personalized medicine that genetic researchers promised. I'm not sure what "transformative" would look like, but I don't think 23andMe's valuation exceeds its potential, if only because of the number of 0's in medical expenditures, globally but especially in the U.S.
Researchers talk a big game, but genomics has turned out to be a massive disappointment and really oversold.
SNP analysis is useful, but leaves out a lot of important variation. Also, it's taken the field a long time to understand that most interesting phenotypes are complex nonlinear functions of many different variations, which makes health discovery far more challenging.
> SNP analysis is useful, but leaves out a lot of important variation
That's true of everything in medicine, especially without SNP analysis. And it'll remain true even with whole genome sequencing.
I think the biggest problem is that until now medicine has revolved around the study and treatment cohorts. Even once we identify the variations, we still need to develop particularized treatments. It requires a tremendous shift in how medicine has been practiced. I think that's what 23andMe was hoping to bootstrap, and why they're not shy about sharing their database with researchers.
Moving from traditional medicine to individual treatment will be done incrementally--splitting what was once a monolithic group into ever smaller subgroups until, eventually, centuries from now, everyone receives tailored treatment. SNPs can still be useful because we're still transitioning from treating monolithic groups, so the variations missed by SNPs are details that we would be unable to leverage, anyhow. The state-of-the-art is always light years ahead of what we can manage to operationalize at scale. Isn't this the lesson so many startups have to learn? On the ground, the real value add always comes in figuring out to make some new technique useful and profitable, and for various reasons it's usually the case that the techniques are already ancient by the time they see substantial use in the market.
There are far more important things to work on than personalized medicine. All personalized medicine would do, in the near term, is make medicine more expensive.
Finding better candidates for clinical trials, and then running better clinical trials are the two biggest things that have a positive impact.
One of the joys of being rich is being able to spend your money however you like.
It's a caution to the rest of us, though. My annual salary is just a rounding error to them, and it's not worth their time to consider my individual fate in any way.
Honestly I'll admit I didn't do well technically, but every interviewer I had just seemed super impersonal and not very friendly. They asked very interrogative questions, and while I get it and am mostly ok with it, I felt like they were asking due to the existing environment they have there.
I just didn't get a great vibe.
Disclaimer: But again, I know I didn't do well on the technical stuff so maybe I'm biased negatively toward the experience.
This breaks my heart to hear. I interviewed there in 2011 as an infra guy, and not only was the infra team personable (the winning question was rapidly identifying the symptoms of a duplex mismatch on a switch ethernet port), the VP of Engineering was awesome as well. He even went so far as to say, "As a tech person, you belong out here in the Bay, even if it's not with us". I turned down the offer, but it was one of the best interview experiences I've ever had.
"As a tech person, you belong out here in the Bay, even if it's not with us" - What the fuck does that mean? People working in tech not in the bay aren't second tier.
> People working in tech not in the bay aren't second tier.
Are we though? If we were to establish criteria by which to judge tiers how would anywhere else in the world compare to the Bay? My intuition is that the Bay is probably more productive and gets paid far more for it. The bay certainly drives just about about every tech trend worth a note. Innovation as well how much tech came out out of that region.
Disclaimer: I would love to move there one day just to be in that world.
There is nothing special about the bay area that isn't geography. The density of workers means you meet a ton of talentless people who shuffle along with the crowd and are rewarded for it because it's unnoticed. I'm paid more to be remote than I was in the bay area and my money goes a lot further. I'm also exponentially more productive not being in a sardine can office. Your intuition is shaped by your inexperience of the reality of the situation. The grass isn't greener in my old backyard than it is in my new pasture but I have a lot more of it now.
The companies that were founded here (Apple, HP, Google etc.) have drawn talent for many years. Additionally, there are some top notch universities with great CS departments (Stanford, Cal among others). So it's not just geography.
> Your intuition is shaped by your inexperience of the reality of the situation
Yes, largely. Though, frankly the grass IS greener on the other side in my case. I am in the middle of nowhere in Canada and my window into the tech world at large is github and YC.
> 30 year bay area veteran here
Do you believe you would have the same opportunities today if you did not spend time in the Bay (didn't get experience, network, insider knowledge)?
The amount to which I was steeped in tech due to being able to do things like dumpster dive for computer hardware in the 80s definitely affected my career path, but _that is not a thing anymore_. And you are already interested, so having a seed of 'what's that?' isn't so necessary.
I've been out of the bay for 5 years, and worked there for almost 20. The opportunities I had were about a time and place, and _today_ that place is far more online than physically based.
If you can make it to the bay, it is a wonderful place, full of tech and culture and people from all over, but it is not the only place with all that. It's also hella expensive.
I think the Bay's time as _the_ place to be is over, but it's still _a_ place to be.
As a guess, people are probably on average a bit sharper. But it's a weak signal. If it were strong, companies would just hire people from the BA without a tech screen, and rarely or never look at people outside the BA. Which is not the case.
I've not worked there and once dreamed of it as you did. On a few business trips, sat in on tech meetups. It is indeed glorious to sit in a large room full of nerds on any given evening. If you're still young and single, you should ride the ride for a few years.
At the same time, it seems like a terrible place to actually live your life, relative to other possibilities in the US.
Well, like I said, could just be that my perspective was tainted a bit by not doing as well as I'd have liked.
But I think sometimes these things just happen too. I think I interviewed in 2018, so that'd be 7 years after you did. I'm sure a lot changes in that much time.
A bunch of engineering directors were brought in from external sources a few years back, and that really changed the atmosphere.
Before then, we seemed to try to hire smart engineers and give them independence to solve problems. Those new directors lowered the hiring bars to grow their teams, and the culture got way more rigid and corporate.
Think the obvious one is that the results are shared and whether someone is a criminal or not (or will be one in the future), people are not particularly comfortable with sharing to parties they didn't initially trust it to for the purposes they trusted it for.
Anecdotally, I bought a 23andme kit (just the genealogy one) but never submitted it because the labeling was to send it to the lab in the next town that manages the company I work for's drug screenings. Well, I don't think I have any pre-existing conditions and certainly don't do drugs, but I don't know about any unknowns on the health side that could impact my insurance if they were to share it to the company. Forget that.