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Florida becomes first state to enact DNA privacy law, blocking insurers (washingtonexaminer.com)
429 points by coronadisaster on July 5, 2020 | hide | past | favorite | 122 comments



I would think the DNA companies would support this.

Right now, I have no plans to ever get a test. My curiosity as to whether I descended from Dr. Zaius or Cornelius is not strong enough for me to risk having my information available for things like insurance companies dinging me.

On another note, I heard that the jury is still out on the lingering aftereffects of COVID-19, and there's a better than even chance that testing positive means that we can be discriminated against for a pre-existing condition for the rest of our lives.


> and there's a better than even chance that testing positive means that we can be discriminated against for a pre-existing condition for the rest of our lives

In the United States it is currently against the law for insurance companies to prevent you from obtaining coverage for having a preexisting condition under the ACA.

That law is being challenged now before the Supreme Court, and the DOJ* has filed a brief arguing that the law is unconstitutional.

If the SCOTUS strikes down the ACA, then it would be absolutely legal for insurance companies to deny you treatment for having had COVID-19 in the past. There is no current legislative plan to replace the ACA if its struck down.

* I personally find the argument in the DOJs brief to be manifestly absurd, but you can decide for yourself here: https://www.supremecourt.gov/DocketPDF/19/19-840/146406/2020...


It sounds like the argument is that the individual mandate to have health insurance has been repealed, so therefore, the mandate for insurers to cover people with preexisting conditions should also be repealed.

What is absurd about that? It seems reasonable to me. Covering preexisting conditions and the individual mandate to buy health insurance are two sides of the same coin.

Personally, I'm on the side of "we should have both" rather than "we should have neither", but the argument that you can't have one without the other is sound.


>It sounds like the argument is that the individual mandate to have health insurance has been repealed

Their argument doesn't work as the Federal individual mandate for insurance stands as law but has no penalty or requirement to report. The basically declawed that component of the ACA. It is not considered for any applications/forms/fees/etc and you no longer need a waiver.

With that in mind, the mandate for insurers to cover regardless of preexisting conditions should stand based on the 2012 decision but that doesn't mean it cannot also be declawed by congress. There are many laws like this, many of which rely on department head for discipline actions or censure but they can simply not do that. This is a common theme among the current administration where ethics laws are constantly broken but there is not mandatory fine or penalty so as long as the manager assigned to judge the penalty fails to oversee their employees, our checks and balances mean nothing.

> Starting with the 2019 plan year (for which you’ll file taxes by July 15, 2020), the Shared Responsibility Payment no longer applies.

https://www.healthcare.gov/fees/fee-for-not-being-covered/


So, here's the background:

After the ACA was originally passed 2010, it was challenged on constitutional grounds. It went to SCOTUS in 2012 (National Federation of Independent Business v. Sebelius, 2012). In that case the court ruled in a 5-4 opinion that the Individual Mandate was a constitutional and valid use of Congress' taxation powers. The law survived the constitutional challenge.

In 2017 a subsequent (now GOP controlled congress) zeroed out the individual mandate penalty.

The individual mandate is now being challenged on constitutional grounds. The logic goes that, since there is no penalty there is no taxation. If there is no taxation, the individual mandate cannot be a constitutional under Congress' taxation powers. I'm fine with all of that.

Here's now the part that I find absurd:

The argument that the individual mandate cannot be severed from the rest of the ACA based on the way it was amended by the 2017 Congress. Therefore, since the IM is no longer constitutional the entire ACA must fall.

The reason I find it absurd is it relies on speech and debate from the original passage of the ACA which argued that the individual mandate was required for the law to function. However, a subsequent congress deliberately chose to zero out the individual mandate without eliminating the law. The subsequent congress' decision making overrides the decision that the congress that passed the ACA. The 2017 Congress very deliberately made the individual mandate completely nonfunctional, while leaving the rest of the law in place.

TL;DR

- 2010 Congress passes the ACA with the Individual Mandate

- 2012 SCOTUS rules it constitutional

- 2017 Congress zeroes out the Individual Mandate

- The argument now is that the 2010 Congress thought the ACA required the IM to function, ignoring that the 2017 Congress very obviously decided that the ACA didn't require the IM to function.

To me there's just no way to square that circle. The 2017 Congress' decision overrides the 2010 Congress' decision.

-----

Finally, logically I agree with you and I agree with the 2010 Congress. The Individual Mandate is necessary for the ACA to function the way it was originally designed. The ACA is a better, more functional, law with the individual mandate in place. I disagreed with the 2017 Congress' decision to remove the mandate.

But that's no longer relevant. The question now is, is the IM necessary for the ACA to function the way the 2017 Congress amended it to function. The answer—since they repealed the individual mandate—is clearly "no".


I disagree that the IM is required for the ACA, because insurance companies now have a common enrollment period 1 time per year to change or obtain insurance, unless there are special circumstances.

The argument for the IM was that people would remain uninsured until they got sick, then go buy insurance. Or, would get crappy+cheap insurance until they got sick and then get good insurance to cover their sickness.

However, neither of those work because there is still an average 6-month waiting period before a person can obtain or change insurance, just like when you could obtain insurance anytime during the year, but there was a 6-month wait on PE conditions.


Why didn't they just repeal the whole thing in 2017?


They didn't have the political ability to do so. They tried to do exactly that, though.

They campaigned on repealing the bill, but replacing it with an alternative (supposed "repeal and replace"). The replacement never materialized (and, to my knowledge, still hasn't a decade after the ACA went into effect). That said, they pressed forward with an attempt to repeal the bill without replacing it (promising to repeal it at a future date).

The House passed a repeal of the ACA (it was a partial repeal, because they were using the reconciliation process of the Senate to avoid the filibuster so it wasn't a total repeal, but it would have eliminated most of the provisions of the ACA.

The House of Representatives passed their repeal bill on May 4, 2017. The Senate attempted to pass their version of the repeal bill (a different bill, but substantively similar) on July 27, 2017. The bill failed in the Senate by a single vote, 49-51 (if it had ended in a tie the Vice President would've broken the tie and assuredly would have voted to pass the bill). 3 members of the Republican party broke ranks to vote against the bill: Lisa Murkowski, Susan Collins, and John McCain.

McCain was the last to vote against the bill. It was an extremely dramatic moment, as the voting was held open for an extended amount of time while the GOP lobbied McCain hard to pass the bill. Ultimately, he voted "No" in a dramatic fashion (https://www.youtube.com/watch?v=hT2pp_KrJGg), and the repeal bill failed in the Senate.

I was watching the Senate vote at the time and it was an incredibly tense and anxious moment. I cannot describe the relief I felt when McCain turned his thumb down and said "no" in that video above. It was a truly shocking moment, and one I'll probably remember for the rest of my life.

So, they tried, but they didn't have the votes.

After failing to repeal the full bill, they proceeded to pass the bill that zeroed out the individual mandate. That was much easier for them to get their caucus on board with, as the mandate was very unpopular with the base of the republican party.


It will have the effect of increasing premiums for all participants, so I'm inclined to agree. Particularly for insurance such as LTC, if you can determine (for yourself) definitive need for the insurance - you will absolutely buy it. But at that point you are not seeking insurance because you have certainty. Rather, you would be cheating everyone that has purchased "insurance". All other participants will soon cease opting for LTC insurance due to expense unless they too have knowledge of definitive need.... LTC companies pay operation costs, salaries, bonuses, become inslovent, file for bankruptcy, and no one else gets anything.


There will always be insurance companies as long as they can formalize a bet where they expect people to pay more in premiums than what they expect they need to pay out.

As long people get a feeling of security, there will also be people willing to pay more in premiums than what they expect to get out.

If people start gaming the system, and DNA testing become very accurate in predicting the future (current commercial DNA testing is not even close), then what will likely happen is that big payouts will go away. It will have enough limits, caps, restrictions and conditions in order to rebalance the risk assessments in favor of the insurance company.


>> Rather, you would be cheating everyone that has purchased "insurance".

That is a very north american definition of insurance. But insurance companies are not collectives. They are for-profit corporations, probably with a PO box in Delaware. Buying an insurance plan isn't like moving into a commune. It is a risk-shifting arrangement with a corporation, a formalized financial hedge. When I buy insurance I don't much care about other customers. They aren't part of my transaction. Maybe I am the only customer for a product. That does happen. It doesn't impact the obligations of the parties.


The point the parent is making is that if you know in advance that you, will need to use the insurance, and you decide to buy it on this basis, then the premium the insurance company charges will need to increase to account for this, or the insurance company will lose money.

Since the premium has increased, the only people who will still pay the higher premium are those that know they will need to make a claim. The premium will therefore rise to the point where _only_ the ones with that extra information will pay.

Insurance markets cannot survive with this kind of information asymmetry.

This is not a North American definition. This is what insurance is.


That's absolutely correct. It also exemplifies why the healthcare market cannot regulate itself.


> When I buy insurance I don't much care about other customers. They aren't part of my transaction. Maybe I am the only customer for a product. That does happen. It doesn't impact the obligations of the parties.

Unfortunately that's not actually how it works with shared pooling of insurance resources. You pay a monthly fee that gets bundled with the fees from other customers and paid out when there are claims against insurance.

If your care was only paid out of your pool of money you've paid into the insurance system, your first month of payment would cover essentially nothing.


The "local pool" is irrelevant. The care is paid out by the insurance corporation. How and where they get the money is thier business. They could get it from selling chickens. All that matters is that they pay.

What about one-off custom policies with a "local pool" of one customer? Such products are made every day.


> How and where they get the money is thier business. > They could get it from selling chickens.

Insurance is a regulated industry and those statements would be terrifying. You have to prove to the state that your mathematics will work into a functional business and have to maintain certain liquidity requirements.

> All that matters is that they pay.

Yeah, and that's one the reasons companies don't like paying since it can dip into their liquidity.


That's beside the point. Insurance is basically just another way to invest wealth. An insurer simply needs to have cash somewhere safe to cover the possible payouts they might reasonably need to make. It still can be a single customer.


This is a very North American discussion, dunelover, though Canadians might have a bone to pick with you concerning your categorization. While I don't imagine that insurance companies will cease to exist, I do imagine that benefits of these plans will become next to nonexistent and the cost will increase dramatically. Though it may end with differentiation and one plan might be available for traumatic injury and one for genetic disorder, exclusively. Regardless, the point stands, if the party that's supposed to pay the bill for my party has even greater incentive to litigate, then I likely will be SOL. And, you're absolutely right, it isn't very much like a commune. However, my insurance rates in North America keep going up because people are unhealthy & overweight and we've subsidized corn sugar into everything edible. For-profit insurance companies are what 'we' have and they have formalized the average cost of care into their hedges. You are not in an insurance bubble, you are in a world of statistics and actuarial science.


While I agree with you, I would not be willing to get a test from these companies even given a law that banned insurance companies from using genomic information (which is a good law, and should be passed!)

There's still the matter of law enforcement having future access to the database for a broad search which concerns me. I don't think I'd be willing to donate to a genomic database unless there was a very strong safeguard against the police making a broad search against the database.


> very strong safeguard against the police making a broad search against the database.

Not likely. The whole point of the DB is to allow "broad searches."

Here's where things get a bit wonky.

LPRs (License Plate Readers), although "icky," are -more or less- legal. The whole purpose of a displayed license plate is to allow the authorities to rapidly match the vehicle with the registered entity.

Driving a vehicle is a privilege and an obligation, so it can easily be argued that driving a vehicle comes with the obligation to display a "tracking" plate. In fact, this might even extend to adding RF trackers. We're almost there, with EZ-Pass (Eastern US).

Phones get a bit dicier. Stingrays are still very much in a legal "gray area." Until they are explicitly banned, we'll probably be seeing lots of them. Just too damn juicy.

But DNA is something else. We don't need to be licensed as "humans" (although I'm sure there's folks that would love to give it a go).

Much as we'd wish folks would live in a manner that obliged them to follow social norms (which is a whole bucket of snakes, right there), that ain't happening. There's no "hook" to force people to submit to DNA tagging; nor (IMNSHO), should there be.

There was some founding father -I don't remember who- that said something along the lines of "I would rather see 100 guilty men go, than one innocent man imprisoned."


Doesn't actually matter if you do it, matters if any of your sister, cousins, grandma, dad, mum, aunty, etc. do.

Depending on the size of your family, could be hundreds of people, some of whom might be criminals and forced to surrender their DNA.


At least for some genes there will be uncertainty whether you got it.


Still will effect your insurance if you have a 25% chance of a particular genetic disease.


It almost seems like for-profit health insurance is a bad idea.


privatisation is useful if a problem is too hard... just let the market decide. less so if every aspect of the issue is well known I think...


Privatization is useful if something isn't in the public interest.

Once you accept that socializing police, fire, elementary schools, high schools, power, water, highways, the entire judicial system, and so on is in the public interest -- and medicine for the poor, the old, the imprisoned and in some cases the young -- the question of socializing medicine for everyone is just a question of where you draw the line.

Currently 40% of America is already under socialized medicine. The argument at hand is 40% or 100%. That's all. Not nearly as big an existential question as the politicians may have you believe. The question is "do we double the number of people covered by socialized medicine or not"?


There's a huge difference between shifting the payment risk from private insurers to the government, and real socialized medicine. Under most socialized medicine schemes the majority of healthcare providers become government employees.


Many, but certainly not all. I imagine most people don't really care who the end-employer of medical staff are if they get guaranteed a certain baseline level of care that isn't "go to A&E and pray they fix you up".


That is just question of definition of 'socialized medicine' term. Many universal healthcare systems in Europe are based on public/government insurance, and mixed private and public healthcare providers.


Medicare does it differently.

You qualify for it and then pick a company to administer benefits. Some companies have great benefits for elders, some have great benefits for young people and families with children.


Socialized medicine does not require single payer, for instance look at how Australia manages their system. Single payer is the exception, not the rule.


Note that 'single payer' does not mean 'single provider'. Single payer systems with many public and private providers are common in Europe.


Actually, the irony of this comment is that hard problems usually need a government to solve them.

So sometimes I talk to CEOs, they come in and they start telling me about leadership, and here’s how we do things. And I say, well, if all I was doing was making a widget or producing an app, and I didn’t have to worry about whether poor people could afford the widget, or I didn’t have to worry about whether the app had some unintended consequences -- setting aside my Syria and Yemen portfolio -- then I think those suggestions are terrific. (Laughter and applause.) That's not, by the way, to say that there aren't huge efficiencies and improvements that have to be made.

But the reason I say this is sometimes we get, I think, in the scientific community, the tech community, the entrepreneurial community, the sense of we just have to blow up the system, or create this parallel society and culture because government is inherently wrecked. No, it's not inherently wrecked; it's just government has to care for, for example, veterans who come home. That's not on your balance sheet, that's on our collective balance sheet, because we have a sacred duty to take care of those veterans. And that's hard and it's messy, and we're building up legacy systems that we can't just blow up.

- President Obama


As a practical matter there are very few mutations which indicate a 25% chance of a particular disease. Most of them have much more modest effects. Like I know I have a mutation which increases my lifetime risk of shoulder dislocation to 1.3% from a baseline average of 0.8%. So what.

The big one is mostly the BRCA mutations which increase cancer risk for women to around 70%.


I'm interested in getting sequenced but I have a few requirements:

- I want the full (98% +) sequencing, not just the exome

- I want to download the full sequence and keep it for own future use with no restrictions

- I don't want my sequence to be used for data mining or sold to third parties without my permission.

- I'm not willing to pay 5 digits for this but I don't expect it for 3 digits either.



Ticks all the boxes, thank you


It'd be nice if the government banned preexisting condition consideration. Extremely possible; it would take one law. It'd change the economics of the market, but would it actually change them enough to make a business model where people hand you money, for free, while they're still alive unprofitable or merely less profitable?


The government has banned pre-existing condition consideration. That was made illegal by the Affordable Healthcare Act (ACA, also known as Obamacare).

As I noted in another comment, that law is currently being challenged in the Supreme Court by the State of Texas, and the DOJ has field a brief arguing that the law should be found unconstitutional.

(See my other comment here for a link to the DOJ brief: https://news.ycombinator.com/item?id=23744702)


> It'd be nice if the government banned preexisting condition consideration.

It...has: https://www.hhs.gov/healthcare/about-the-aca/pre-existing-co...


Reminds me of one of the reasons Obama brought up in a debate (I forget which one tbh, might of been the one with McCain) that he wanted affordable healthcare because his grandmother was denied care due to a preexisting condition or something to that effect.

I guess banning preexisting conditions would of been a more interesting alternative. Not sure what negative effects that ban would have, maybe coverage will rise due to surgeries not going as hoped or other cases.


They've been banned for a decade now, so...


What about GINA? https://en.wikipedia.org/wiki/Genetic_Information_Nondiscrim...

> The act bars the use of genetic information in health insurance and employment: it prohibits group health plans and health insurers from denying coverage to a healthy individual or charging that person higher premiums based solely on a genetic predisposition to developing a disease in the future, and it bars employers from using individuals' genetic information when making hiring, firing, job placement, or promotion decisions.


I had to scroll down way too far to see this. The added value of the Florida law was at the end of the article. It included:

> long-term-care, life and disability insurers.


Doesn't go nearly far enough. Most other types of insurance other than health insurance can discriminate based on genetic data.


Great decision! What is the point of insurance if they can predict your health issues.


To properly price the product. Otherwise, people at higher risk are subsidized more heavily by people at lower risk.

This isn’t about healthcare insurance (which is protected against the use of DNA data by federal statute).

If you’re at higher risk of early death or needing extended long term care, even through no fault of your own, shouldn’t you have to pay more for these optional products? That’s what insurance premiums are for: to appropriately price risk.


> To properly price the product. Otherwise, people at higher risk are subsidized more heavily by people at lower risk.

But that's the very definition of insurance: spread the risk over the entire pool.

US health insurance does not work this way, and it's part of the reason that system is so messed up and super expensive.


> But that's the very definition of insurance: spread the risk over the entire pool.

But the devil is in the details, specifically in the definition of the "pool". To keep it fair (and subscription voluntary) generally requires pooling similar risk levels. Which is why for car insurance your driving record is important; for term life, your age and smoking status; etc.

But at least in the US, health insurance is not really an insurance (as in your definition of spreading the risk of rare but expensive events); it is a complex monster touching negotiated pricing, access to care, etc.


What's the 'pool'?

You are implicitly arguing that it should be the entire population, but lots of people see it as a chosen group with identifiably similar levels of risks.


it should, obviously, be the entire population.


That’s called taxpayer funded healthcare, but US voters don’t want that.


I don’t think that’s true. What US voters don’t want is the level of care you get from a doctor who takes Medicaid. A single payer system can work here but because of how bad the “poor people doctors” treat patients it’s going to require some convincing.


I don’t see US voters complaining about Medicare, which is basically taxpayer funded healthcare for hospitals after you’re 65.

Medicaid is intentionally handicapped since it’s a poor person program and poor people don’t have good political representation.


> I don’t see US voters complaining about Medicare, which is basically taxpayer funded healthcare for hospitals after you’re 65.

“For hospitals” is just Part A. And, “over 65 or disabled”.


A small minority don't want it, so they've spent a lot of money and effort to misrepresent what it's effects will be (see Wendell Potter's admission of this) to scare gullible voters out of wanting it. Even then, if it were in a national referendum it could pass.


For healthcare it's pretty clear cut.

For a lot of types of insurance I don't think it is clear cut at all.

(Note that the law in the article is about other types of insurance, not healthcare)


It should, obviously, not be the entire population. Why should I subsidize smoker healthcare?


Because you've eaten a burger, lived in a city, work in a chemicals factory, driven a car, crossed a road, [insert anything else that increases the chance of death or illness], ...

Everyone gets ill, everyone dies, smokers in most countries pay additional taxes on every packet of cigarettes they buy. But, even if they didn't, having a national insurance scheme (as we have in the UK), is the best way of spreading the risk of costly healthcare.

When you buy insurance you're not subsidising anybody, you're joining a pot of individuals who are trying to lower the overall risk of high medical bills. The more people, the easier it is to absorb exceptional costs.


OP succinctly summed up the exact reason universal single-payer healthcare will never be politically viable in the USA. The “why should I pay for something that also helps other people” attitude is pervasive and unstoppable here. People here won’t even do so much as put a piece of cloth over their faces to help keep others healthy while they buy their Ranch dressing and chow down on Buffalo Wild Wings. You think they’re going to put up with paying a little more in taxes for universal healthcare?


Smokers die earlier, and die before incurring major costs from dying of old age. They are cheaper to insure than healthy people who live long lives.


Why in the world wouldn't you? It's the same reason you should subsidize cancer patient health-care even if you don't have cancer: because people should live, and as a society we have more than enough resources to take care of everyone, if we pool them correctly.


> Why should I subsidize smoker healthcare?

You already do, when that guy gets cancer, dies and has no money left over, your taxes pay for his care. You're just cutting out the middle man at that point.


   How old is the smoker?  And you? What type of care does the plan for the pool you could both be in cover? There are risk pools of less than ten to over one million to choose from in private hc market currently... But the best argument is cost.  

   A single payor system would likely cost you much less overall for the same level of hc coverage as current options.   If you have to subsidize *more* smokers than you currently for a plan (risk pool) to be economically feasible but the cost of care is lowered enough that your overall cost is reduced it would save you money.  


  The reduced cost of care would increase the social and community improvement we see from a baseline level of charitable healthcare we as a nation have already agreed to subsidize. 


  A functional single payor system will likely require larger risk pools but greatly reduce cost by mitigating the current market forces that drive our ever inflating cost of care. Providing better charitable care for our sick is a noble and ethical goal to target as a society and you *being open to the idea* of subsidizing *more* smokers healthcare helps us achieve that so thanks for asking the question.


That’s actually the one carve out that insurance companies have. They can charge more if you are a smoker.


Life, disability, and long term care are not the same as health insurance (which shouldn’t be insurance! It should be universal healthcare).

You insure against risk, you pay for care, just as you pay for gas in your car and oil changes, but your insurance covers accidents (which goes so far as to charge people of different genders and ages differently because of the risk demonstrated by the data). Should I be offended that my auto insurance charged me a crazy high premium for driving a high performance sports car at 18 years old as a single male? No! I was a high risk based on the data (which distilled down to my own risk management as then owner of an 18 year old male brain). And if the data (even genetic data) shows someone to be higher risk for an insurance product (again, we’re not talking health insurance or healthcare), they should be exposed to that cost.

Life isn’t fair, and this is a poor attempt at tilting the scales if your goal is to make it more fair (considering the size of your risk pools at typical private insurers offering these products). It’s an unfunded mandate.


Your views, while very common, or at least commonly expressed, really bother me because of what seems to me like an obvious reductio ad absurdam.

You can always take any existing regime of discrimination and make it more fine grained, but at some point that has to stop or there is no insurance. If discrimination has to stop somewhere, then there's no principled reason why the discrimination you like is necessary, or natural. Even apart from the existence of protected classes in society.

If an insurance company can discriminate arbitrarily, why not do it in real time? Your car could have a monitor that would tell if you are tired or drunk. Would it make sense to allow them to charge you extra minute by minute? The ultimate would be to have the decelerometer that sets off your airbag signal the insurance company, and charge you based on the projected average repair cost before you come to a stop.

Sometimes people say car insurance is like health insurance and sometimes they say it's not, but both have extensive regulation that prevents the insurance company from maximizing returns, because insurance is extremely susceptible to devolving into taking in money and paying 0% out. It seems fundamentally wrong headed to me to have in your mind an ideal of an untrammeled insurance market of any type, when it has to be heavily regulated to be of any use.


Why is a red Corvette more expensive to insure than a white Camry?


Right, but people that have gotten into a lot of car accidents pay higher premiums than people with accident-free records.

Insurance is not socialism. If my risk of getting into a car accident is low, shouldn't I pay low premiums? Why should I subsidize bad drivers?


Why should you pay higher premiums for color of skin or sexual orientation? After all you don't choose these. Same goes for your DNA.

I think we already have precedents which go further. With ADA you have to provide reasonable accommodation for disabled people. Some of them are disabled purely by chance, but some are disabled because they are dumb (they dived head on and are now on a wheelchair). No difference under that law.


In some circumstances (life, disability, and long term care insurance are not compulsory nor necessary in all situations), you should pay for risk you incur, whether by choice or not.

This isn’t about race or sex (and the discrimination argument made), but the underlying genetics that present as those traits (and any risks, such as premature death or the need for extended assisted care, that come along for the ride).

Using systems like social security and universal healthcare are better models if the desire is to ignore identifying and pricing risk (as insurance does) and spread the costs across the population with less admin overhead.


> Why should I subsidize bad drivers?

You realize you still share the same roads with bad drivers, right? Insurance pool is the wrong level of abstraction to isolate bad driving. If anything, it puts our skin in the game to advocate for better education, prevention, licensing and enforcement on bad driving.

This is almost the same for healthcare. Covid demonstrated one more time, state of public health is tightly connected to your individual health. There is no rugged individualism as far as the virus is concerned.


I think the idea is to spread risk without promoting risk taking, therefore increasing total cost to society. Pricing risky behaviors I'm all for (speeding, accidents, smoking, obesity in most circumstances), as it lowers the cost to society by penalizing the behavior and shifting the burden of the extra risk to the risk taker. With DNA, there is no change in the total cost to be made, the people with the genes will still be around and still need care whether or not you help them pay for it... Unless the goal is to make it more expensive for people with 'bad' genes to procreate. There's an argument to be made for that, but good luck making it...


> Otherwise, people at higher risk are subsidized more heavily by people at lower risk.

This is basically how it works in Europe and it's fine. I see the concept of punishing people for how their body behaves deeply unethical. We can't control this, things happen randomly to many of us.

Obviously you could sell cheap health insurances to people that you know will be healthy, but isn't this essentially a scam?


Not anymore than selling cheap car insurance for safe drivers.

But, in general, I'm not sure health insurance would work without risk pooling. A large part of the problem is that health insurance isn't exactly insurance: paying for medication that someone takes everyday doesn't really fit the definition.

If we could start over from a clean slate, I don't see any reason why a health care system without insurance wouldn't work (it works it many other countries). But, as it stands, I fear that the only way we can fix our Healthcare problem is to implement single payer.


Massively boosting the number of doctors (and other direct care providers) would almost certainly have a positive effect on the healthcare system.

There's arguments against it, cost (not a good one, it would reduce costs) and 'quality' (not a good one, there's lots of great potential doctors not getting trained).

There's no forcing anybody to do anything (just removing restrictions on educating people and providing funding for training). It wouldn't even cost all that much (a few trillion over a decade vs $4 trillion annually on medical care).


> I see the concept of punishing people for how their body behaves deeply unethical.

Your ethics is a bit roundabout. Nature is the one introducing unfairness and "punishment" to the world. In a sense you are blaming companies for treating them equally rather than taking it upon themselves to correct the unfairness of nature.

Really what we have here is a situation where insurance is an appropriate solution for some people, while others need charity. You are presuming that there is no charity for some reason, and that those people who need it are the insurance systems responsibility too.

And 20 years ago healthy young people could get insurance very cheap (Less than what people spend on phones today). It wasn't a scam. Sooner or later you might get food poisoning or fall off your bike and break your leg or something. And there's always a small chance something really horrible would happen.


Attempting to invoke nature as a basis for a definition of ethical is not ethical.

Yes, nature gave one person cancer and not another person, or nature makes a young person on average healthier than an old person.

But what we do with the hand nature has dealt us is on us not nature. Saying "Hey it's nature that made that guy require so much resources, there's nothing we can do about that, they simply cost more and so they should have to pay more, or die more." Is both unethical and a lie, because, there IS something we can do about it.

We are not unthinking animals with no capacity to bend nature to our will, or at least compensate for nature we can't bend.

And the people who cost more among us are not objects with no other factors in their equations than what they cost vs what they produce.

When you say "Nature is the one introducing the unfairness." You actually make the very point you think you are arguing against.

You say "It's Nature's fault", which is true, but then you, with very swiss cheese ethics, select only 2 out of the 3 implications from that to care about. You only talk about how that means it's not your fault or any insurance companies fault, and you don't account for the equally true fact that it's also not the cancer victims fault.

If something is "introduced by Nature" your own words remember, then you yourself are acknowledging that it's no one's fault, and therefor no one's responsibility.

Your inventively kinked ethics interprets that to mean only that therefor it's not your responsibility to do anything about it, completely neglecting the perfectly valid opposite option that if it's no single persons responsibility, then it's everyone's responsibility equally.

It doesn't matter what arguments you manage to muster in defense of the selfish and frankly sociopathic response to the given facts of life and "nature", it's all the damning it needs to be merely that you try, other than in a devil's advocate role.


> But what we do with the hand nature has dealt us is on us not nature. Saying "Hey it's nature that made that guy require so much resources, there's nothing we can do about that, they simply cost more and so they should have to pay more, or die more." Is both unethical and a lie, because, there IS something we can do about it.

Yes, provide them charity. I think perhaps your emotions interfered with your concentration and you you didn't read my post quite carefully enough. Particularly this part: "Really what we have here is a situation where insurance is an appropriate solution for some people, while others need charity. You are presuming that there is no charity for some reason, and that those people who need it are the insurance systems responsibility too."

Insurance companies aren't healthcare providers nor are they charities. Insurance is a product to manage risk. A certain and chronic need for health maintenance is not a risk anymore.


US long term care insurance is asset protection. The payer of last resort for things like nursing home care is Medicaid. If you don't have any assets, it starts paying right away. If you have assets, those go first, then Medicaid kicks in.

So long term care insurance is for people that want to preserve their assets and/or receive care beyond what Medicaid will fund.


Long term care insurance is mostly a harebrained financial innovation that doesn’t work financially.


Fair enough.


Consider the most extreme case: what if their prediction is so good that they can predict the exact amount of healthcare spending that you will incur? In that case there wouldn't be any point in getting any insurance because the insurer will charge you the exact amount that you will cost (+ their overhead, of course). You'll be better off paying everything out of pocket.


A single bus can change all of that. It almost never pays to self insure unless you are fabulously wealthy


Not disagreeing; what you said is “running an insurance company 101”

The problem is that the logical extreme is eugenics (and DNA testing is making that a practical reality), except we have a weird carve out for people in the US that have a “proper” job.

That’s why many (most?) people think it’s time to abolish private, for-profit health insurance.


Otherwise it’s the same as having no insurance, but with extra steps. The people who can get insurance won’t be needing it and the people who need it can’t get it.


But the prohibition doesn’t apply to life, disability or long-term care coverage.

So it's meaningless unless you buy an individual non-Affordable Care Act policy.


Did you read the article? That's the current federal law.

Florida is extending that federal prohibition, it now applies to long-term-care, life, and disability insurers.


Nobody reads the articles apparently. This is getting as bad as reddit :-(


GINA already forbids health insurance from doing this at a federal level. This extends those protections on a state level to other types of insurance.


I’m not sure individual long term care policies are a viable product if you let people who took genetic tests buy it, but can’t take that information into account when setting rates. I think it’s already pretty hard to buy unless you’re in a group plan.


health is a fascinating area of privacy because

(1) it's one of the best-known and beefiest privacy statutes (HIPAA)

(2) you have a legit negotiation interest in keeping your info private (wouldn't want to tell an insurer about past history lest they charge you more)

and (3) insurers can punish you for witholding information by revoking coverage when they find out

this is an important step


(2) and (3) really are an US-only thing. In the Netherlands insurers have to provide at least a government-composited insurance package to everyone, and they have to charge all their clients the same rate.


The ACA in the US only allows age and smoking status for pricing and the companies can't arbitrarily cancel policies anymore.

The problem is that a big portion of the country either thinks those things are bad or doesn't understand what they are.

https://www.hhs.gov/healthcare/about-the-aca/index.html


> (3) insurers can punish you for witholding information by revoking coverage when they find out

I keep saying this over and over, read your policy. Make changes before you sign. My life insurance policy has verbiage that specifically says “anything found to be inaccurate after the second year cannot disqualify the insurance”

My advisor was explicit in the search for a provider that allowed this. I also may have given up way too much of my information for the privilege, but... worth it.


> (1) it's one of the best-known and beefiest privacy statutes (HIPAA)

HIPPA protects you from gossiping staff, everything else is fantasy thinking.

When my wife miscarried and was hospitalized from an ectopic pregnancy, sufficient PII was available through various channels for enfamil to send a “Welcome Baby” biz via fedex on the would-be due date.


I’m so sorry. I hear advertising stories like this more and more frequently and I wonder when the US will at least ban targeted advertising based on health data - actual and inferred. It‘s despicable.


Thanks, I appreciate the thought.

We felt really violated by this, and I ended up buying the marketing list in question for my zip code to understand what happened better. It’s unlikely anything will change for the better. The scrubbing of identity data is pretty easy to reverse engineer by design, as the stream of data is used by pharmaceutical companies, insurance subrogation, etc to do all sorts of things. A pharmaceutical sales rep has a scorecard for your doctor — they bpm now how many scripts were written and filled. The people who gather prescription data have your prescription before your pharmacy does.

Some states have fed things like Medicaid claim data to companies to mesh against data from insurers to build models designed to target opioid abuse. By correlating events or behaviors tied to abuse to diagnoses, predictive models can be built from unprivileged data. (Remember when Target predicted someone’s pregnancy before they knew a few years ago?)


It also doesn't seem to stop organizations with your PII from using your health records to market to you.

When I came down with a particular condition, I started receiving advertising solicitations from Walgreens about.


Hospitals and practices make signing over the right to share your data with whomever they please a routine process.


(2) is not true. SOME people have an interest in keeping their medical info private. Others (probably most people, since healthcare expenses are tail-weighted towards people with VERY expensive medical conditions) have an interest in telling the insurance company EVERYTHING about themselves, because they know if the insurance company is allowed to set up fine-grained risk pools, they'll be in a low-risk and cheaper one.

Perfectly reasonable to argue that as a society we don't want insurance to work this way, fully information-dense. But it's not correct to argue that most insurance consumers directly economically benefit from information privacy. It's that we've decided, for society overall, that it's OK to socialize uncommon costs onto the masses.


It is in no one's best interest to provide DNA to their insurance provider in the interest of "full-disclosure" in hopes of negotiating a lower rate.

Let's say that today you are aware of no sequences in your genome which correlate with disease. You give a sample to your provider as proof. Tomorrow, a new link is discovered between a disease and a sequence you do have. Your premiums then go up considerably.

There is an unbounded number of future medical discoveries which could cause you to be considered risky. This is the fundamental problem with giving away privacy: it's fine, until one day the world changes, and it wasn't fine.


It could work the other way to: new analysis on your DNA could reduce your premiums. As such, I don't think it's unreasonable for some people to want to submit their DNA.


Figuring out increasingly accurately who is going to get sick breaks the entire point of insurance as a cost pool based on the inherent uncertainty of who is going to be a net payer and who a net payee and at the limit your costs gets increasingly close to the cost of care + cost of administration with the added negative that the insurance industry that has taken your premiums for decades can decide they like your money too much to part with it and keep it depriving you of care perhaps because the care that may keep you alive is experimental.

It is in all of societies interests to make the temporary gains you describe simply illegal and to reconsider the utility of insurance as a method to pay for medical care in the face of increasingly predictable risks.


> Let's say that today you are aware of no sequences in your genome which correlate with disease. You give a sample to your provider as proof. Tomorrow, a new link is discovered between a disease and a sequence you do have. Your premiums then go up considerably.

Yes, and everyone else's rates go a bit down . It's not a negative-sum game -- assuming a reasonable competitive market, you're going to get a fair rate in a maximal-information pool.

You may increase risk somewhat, but if you know -- from personal and historical experience -- that your family is not especially high risk, you're still on average better off sharing as much information as you can.


If you want to look for efficiencies in the (US) insurance market from information sharing it’s going to be far more cost effective to even out the flow of information coming the other direction: transparency of pricing. More price information about everything from drugs, to procedures, to copays and premiums. We’ll all save a lot more money by shining a light further up the chain than we will by individually offering up our DNA to save a few hundred bucks each year. And we’ll get to maintain a bit of privacy, too.


I don't disagree wrt transparency (although for many people I suspect genomic data is worth a lot more than a few hundred bucks a year), but these are separate concerns. I'm just disagreeing with the OP assertion that "submitting your own DNA is always negative value"

Definitely making no claim whatsoever as to what the best way to make healthcare more cost-effective is.


Are you taking into account that your genome is inherited? If you have good knowledge of your ancestors back a few generations and their health you could probably make a pretty good guess whether or not there is some factor lurking in your genome that correlates with a disease severe enough to raise your rates.

This could make the potential savings worth the risk for some people.

(I wonder if a new kind of insurance would develop for the risk that disclosing your genome raises your rates?)


From a societal standpoint, we should work to make things like term life and disability insurance broadly available and relatively even priced, not rewards for good genes.

(there's lots of reasons, a big one is that they are often implicated in the standard of living that children will attain)

If you want to have other social programs that universally bolster standard of living, then it's fine to make insurance a stupid awful game for people to play.


Actually what percentage of people are likely to never be part of a household that would pay more than average.

Pretty much only people who die before getting sick and old.


Interesting note: for the purposes of life insurance coverage, your health information is NOT covered by HIPAA. It’s still technically PHI but life insurers aren’t a “covered entity” under HIPAA so are free to blast your information completely unencrypted to any of their partners.

It’s ultimately the same reason Apple Health isn’t covered by HIPAA. It is pretty sketchy though given it’s almost involuntary if you want coverage.


I really wish strong protections would be adopted universally for all forms of discrimmination based on genetics. There is an amazing amount of value to be unlocked but we will never get there if people have to roll a giant dice to access their genetic information. I wish I could have any faith that insurance companies would see the longer term benefit in enabling people to freely learn about their health risks and manage them. However I have observed completely the opposite so far - people with very mild genetic results being denied completely unrelated insurance because an insurance algorithm auto-banned them.


Interesting. Florida became the home of "Florida Man" because it is notoriously lax on privacy restrictions in another area (arrest records).


It's often credited as being one of the most "free" states, with things like information and no income tax.


Does the Illinois Biometric Information Privacy Act not already cover this?


Unfortunately it does not. The definition of “biometric identifiers” is pretty narrow: finger print, iris scans, facial geometry, and voice recognition. IIRC genetic information is specifically excluded from the definition as are a host of medical-related types of data (x-rays, for example).



I hope this California bill[0] soon gets enacted into law, that would give extra protection to the residents against selling a customers data without written consent. Written consent is big here!!

[0] https://www.sacbee.com/news/politics-government/capitol-aler...)


Can we add this to the constitution?


"Federal law prevents health insurers from using genetic information in underwriting policies and in setting premiums, but the prohibition doesn’t apply to life, disability or long-term care coverage."


My profile says that I posted this link 11 hours ago, but the front page says that I posted it 9 hours ago... that was done to boost the post, I guess? (I'm not sure when I posted it)


It’s like that film Gattaca is becoming reality




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