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".
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?