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?
You already have since your DNA is out there in a database.
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.
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)
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.
[0] https://www.washingtonpost.com/news/true-crime/wp/2018/04/27...
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.
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.
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.
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 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.
Yes it is much better when corupt government bureaucrats do that ::Rolleyes::
So your sarcastic comment is actually correct...
The actual CARE people in the US get is the best in the world, wealthy people from every nation come here to get their care
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
But the actual care... No that is not "objectively worse" to any country anywhere, our health care is the best.
People often confuse care with insurance, our Insurance system sucks largely do to government
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.
>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'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.
And I'm pretty sure paternity tests have a lot of precedent in US courts.
> ... 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.
[1] https://www.genome.gov/about-genomics/policy-issues/Genetic-...
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.
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.
"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.
That's enough to identify people in some zipcodes.
https://www.johndcook.com/blog/2018/12/07/no-funding-for-unw...
https://www.johndcook.com/blog/2018/12/07/simulating-zipcode...
I don't see any reason to give them your exact birthdate.
They could obviously dig into the billing data and get my info, but at least it's not right there together.
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.
You can also request it be destroyed:
https://www.health.mil/Military-Health-Topics/Research-and-I...
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. That doesn't seem like an actual solution to me.
> and you can decide to spend (or not) your money with a company.
Which is what I do, but doing that doesn't affect the company's behavior.
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.
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?
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
That's just one small example.
In any case, the government having this data and a private, for profit company having this data feels like two quite different things.
As have private companies.
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.
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.
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.
Presumably someone will be following behind me next week to hoover up any bodily fluids I leave when I get Starbucks, and on my way home from the gym.
As a 23andMe customer from a couple years ago, it never even occured to me to try re-running the results.
"Remember the thing we sold you before? Well, it wasn't that great. But now it is. Give us more money?"
Who does not want DNA 2020? I do. [NOT in this case]
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.
https://customercare.23andme.com/hc/en-us/articles/360025014...
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.
[1] https://www.lendingpoint.com/blog/appendectomy-what-it-costs...
Maybe we could make it elective and pump those numbers up to grow the addressable market size to all Americans
https://www.sciencedaily.com/releases/2017/01/170109162333.h...
Not always, possibly not most, but many.
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.
Gee, how magnanimous of you...
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.
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.
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.
Monthly/yearly subscription to updates of some sort
And tie it into credit score fear.
"Do you want a higher credit score? Sure, we all do. So be sure your 23andMe DNA is up-to-date!"
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".
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.
Wrong. Not that they cannot.
Just that they ARE not. That only lasts for so long until people are fed up.
Then, reset.
[1] https://www.npr.org/sections/health-shots/2018/08/07/6360262...
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:
https://news.bloomberglaw.com/daily-labor-report/genetic-bia...
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.
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.
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.
"We're sorry. We can do better. How about we help write a law that regulates us?"
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...
Being Steve, the story was told in an awww, shucks Ron Howard style with a happy ending, but I found it kind of disturbing.
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.
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.
[1] https://www.npr.org/sections/health-shots/2018/08/07/6360262...
GINA (Genetic Information Nondiscrimination Act) https://www.govinfo.gov/content/pkg/BILLS-110s358rs/pdf/BILL...
Looks like the modern equivalent to having a new identity after a fake new ID card.
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.
What about alcohol or caffeine?
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.).
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.