Genetic Discrimination Is Coming for Us All | Hacker News Reader

Genetic Discrimination Is Coming for Us All

theatlantic.com

49 pointselsewhen62 comments

From the perspective of "European" insurance... this is what you get if you let unbridled adverse selection into your market(s). Health insurance is perfectly manageable (if and only?) if you accept (some) mandatory coverage. Otherwise the market will unravel. Same for other types of coverage with medical acceptance (life, disability). Once you start on that treadmill, you will lose large parts of the market where the product / coverage would actually be most benificial in terms of utility. You do need some way of making the product work both ways (could be long term contracts, prohibition on using certain types of information, ...).

Example: My firms has a niche. It turns what usually is an individual disability product (where you have to have extensive medical checks up front to deal with adverse selection), into a product sold to employers for most or all employees at once (that is the key). Yes, in my country disability is a subject that employers and unions actually talk about in collective bargaining. That pretty small change takes away the adverse selection. It makes the average claim manageable, it shares burdens and keeps pricing acceptable. We are even experimenting with blank acceptance for employees who opted-out earlier. That's tricky since that brings back the adverse selection on the individual level. Still learning about how to reduce that effect, while keeping our product affordable and manageable.

we should just stop calling it insurance, and call it socialised medicine

the young pay for the old

"insurance" means there's some chance you're having an adverse event, and a lot of chance you don't

but with medicine, (almost) all of us will get old, and require tons of it

> "insurance" means there's some chance you're having an adverse event, and a lot of chance you don't

Exactly. Classic insurance is a bet: the insured is betting that something bad will happen (e.g. house burns down), and the insurer is betting that it will be fine.

The problem with health insurance is that the insured will always be correct eventually. The model fundamentally doesn’t work, except if you adjust the parameters of timescale, population, etc. (which tends to be grossly discriminatory except for voluntary behaviors like smoking).

I disagree. Insurance isn’t a bet. Bets are zero sum (or worse). Insurance isn’t zero sum. It’s a structured redistribution of risk bringing both an improved expected utility (if we assume risk aversion) And expected profits to the risk takers. (The funny economist would argue that a casino is the same if we assume the opposite of risk aversion (tolerance / seeking)).

I agree with the point that for high chance, low impact events insurance is less efficient. Follows from the same basic utility theory. Insurance is not costless and costs will start to dominate benefits.

The intergenerational aspects of health insurance are a good point. Inflation and medical-technological progress still make insurance a good solution in my book. You can save for a pension (still looking at most of the Western world for saving too little); it’s harder to save for unknown future costs whose height is dependent on where the medical risk falls.

People pay for each other all the time? The old pay the tuition of the young. (Well, not in the US.) Older people pay way more income and wealth tax. Via that logic any re-distribution leads to the conclusion of socialization? I cannot argue pro insurance with Milton Freedman or proper libertarians. (And even have my share of attraction to that part of the spectrum of political philosophy.)

I can point out that insurance that works is a staple in large parts of the capitalist world, and has been for some 4 centuries.

Redistribution = socialisation, I see no practical distinction or differences, but I’m open to you clarifying any that I’m missing.

I’m not arguing against socialisation of medicine per se (though there are obviously worse (UK) and better (Switzerland) models), I’m arguing against using propaganda words for it like “insurance” when it’s anything but.

Swiss medicine is not socialized, it's private.

Well, "private".

Every resident is required by law to have health insurance, if you can't afford it, the state will pay it for you.

Insurance companies cannot reject you. There's a limited list of personal characteristics they can use to discriminate on price (I think it's basically just where you live, and your age).

The list of required benefits covered by insurance is also prescribed by the state.

So it's socialized in the sense that "everybody is covered" but the implementation is very "private" i.e. competitive market, which is why I like it, yes.

> if you can't afford it, the state will pay it for you.

So like in the US?

I’m not 100% familiar with US system but I think it’s quite a bit different.

First of all, MedicAid and MediCare, are insurers - so basically, if you’re poor (or old), the state pays for your procedures, not for your insurance. That in itself is a massive disruption of the free market (because there’s no competition) and a breeding ground for incompetence and corruption.

In addition, in the US most insurance is paid by the companies, so individuals get much shittier deals. In Switzerland, everyone pays their own.

Finally, in Switzerland the basic services covered by insurance are determined by the state, so there’s no idiotic and, frankly, dangerous concept of “out of network” like in the US.

I guess I agree with you? A mandatory insurance is a socialized solution.

But I think the market for a mandatory insurance can still have mostly capitalist intent. Competition, private ownership of capital, the functioning of a market.

Health care is the harder example. No perfect system exists AFAIK. Although I do believe that the real socialist Or capitalist solutions fail a lot sooner than the somewhat mixed approaches in this world. That’s also why I keep looking for other insurance markets as examples. The easy examples of functioning markets tell us that something can work. The hard problems are left for humans to solve.

>Health insurance is perfectly manageable (if and only?) if you accept (some) mandatory coverage. Otherwise the market will unravel.

Isn't that what obamacare was supposed to solve by making health insurance "mandatory"?

Yes, but the republicans got rid of most of the mandatory part.

I think it ended up having too much variability in coverage, so like car insurance everyone gets pretty cheap plans?

mandatory medicare would have a very wide risk pool in comparison right

Basically.

An important fact (illustrated wonderfully in “Gattaca” which everyone rightly loves) is that there is not naturally any such thing as genetic privacy. If someone wants your DNA, you are constantly leaving it everywhere you go, and sequencing and checking SNPs just keeps getting cheaper and easier.

So genetic privacy, or at least nondiscrimination, is something we need to actively create with laws and social norms, if we want it.

Yep. For example, I can see a person is black/asian/whatever. And our society (well, most of it) acknowledges that to discriminate based on that is wrong. Someone can get my DNA data. Society needs to also acknowledge that discrimination based on that is also wrong.

What should terrify you is that "most of it" is highly contingent on context. "I can excuse racism, but I draw the line at _____," is a real thing. (Last week, it was "egg prices.") Never underestimate people's willingness to ruin or end your life, and the lives of those they can put in a box with you, over something that is transitory and/or fixable. Genetic discrimination is just another, perhaps more versatile, box.

Data privacy is an instructive example of what happens in a more free-for-all situation. If there were stringent protections in place, the data broker industry wouldn't exist.

You could focus on the discrimination, or you could fix the healthcare system.

It seems that this can only be a problem if there isn't universal access to healthcare with some form of mandatory health insurance, medicare for all, whatever system that makes healthcare a right and covers everyone regardless of pre existing conditions and economic situation.

That doesn't fix the issue because then people will stigmatize things that have negative health consequences which is what already happens in pieces like Europe.

It does solve this problem.

Sure healthy things are promoted, unhealthy things are sometimes taxed more (like smoking), that's a good thing. But I can do what I want, and if I get sick or injured because of my actions, my genetics, or whatever reason, I can still get insurance and healthcare.

Doesn't mean our system is without problems, of course it has plenty, but not these..

Stigmatizing things that have negative health consequences seems good..?

Who could have predicted this...

I still remember the discussion on this very forum years ago when these cheap DNA services opened and it was about 50/50 between people saying there was no risks and people saying we were opening pandora's box.

In the 90's I brought this up to my squadron commander. He asked if I was afraid they would clone me. I said, "No sir, you should be afraid you would clone me." and we both had a chuckle because that was true. I had explained that multiple people already had their insurance retroactively cancelled whilst laid up in a hospital bed with a $100K+ bill because their DNA indicated the individual had a high probability of becoming an alcoholic some day.

The commander sent me down the path of FOIA knowing it would stall the requirement to submit blood to Washington DC for classified reasons and I was able to get out of the military by the time FOIA had completed. I ended up with several big boxes of paperwork that amounted to - they can do whatever they want with my DNA and hold it for any period of time and provide access to whomever they wanted. I have zero regrets for fighting/stalling that one.

To this day people are still dismissive about DNA privacy. I can not wrap my head around that. Countries are already working on duel-use medicine that can also be used as highly targeted genetic weapons. I can think of thousands of highly dystopian uses for DNA.

I also think this may depend upon the State you live in. At this moment of time, I expect Bill lives in a Red State.

But as time goes on, I can see this spreading to all States as the US continues on with Privatizing Medical Care.

With the new incoming admin., I expect this will get worse. Not that the Current administration did a great deal fix health care for the US. He did lower some drug costs for Medicare, but nothing for other people.

Ya this is the fallacy with leaving human rights up to the states.

There are certain shared values which must be defended in order to have a free society. Which means that people who don't see a problem with these eventualities (due to their intolerance) can't be allowed to control government. The tolerant can't tolerate intolerance because the intolerant break the rules of the game and eventually collapse civil society.

Unfortunately I've watched intolerance reign for most of my life, definitely the last 25 years, which is roughly everything after the Dot Bomb, 9/11, etc. Now ignorance fueled by propaganda created by billionaires under wealth inequality determines our election outcomes and I worry that it may be too late to stop the global societal collapse that's coming.

Yes, I agree with you on this. But we are seeing one big bomb coming our way. Climate Change.

It is a race on what happens first. To me Climate Change will be like a cleansing, and since most governments of "first world" countries refused to address it over the past 50 years. Everyone will get to pay the price now :(

Now/soon the US is doubling down on speeding up Climate Change, and as usual the young will suffer the most.

Did you know you can buy an Oxford Nanopore sequencer for about $2000 euro? It sits on your desk and it will sequence DNA or RNA at about 450 bases per second

https://nanoporetech.com/platform/technology

It somehow grabs a free strand of DNA\RNA and pulls it through a specially constructed pore on a membrane. It reads the voltage change as it goes through because each type of base (ATGC) changes the voltage differently, and interprets the sequence and outputs the data in a file.

Doesn't even need PCR amplification because it reads a single strand.

I thought it must be fake because it sounds like something out of science fiction but Nature did an article:

https://www.nature.com/articles/s41587-021-01108-x

Mind blowing

What's the accuracy of this compared to commercial sequencing services, and what's the actual TCO? Can 20 people do a group buy for one machine, and use it to get truly private DNA sequencing for $150 ($100 capex + $50 for consumables)?

> In 2008, the Genetic Information Nondiscrimination Act (GINA) was signed into law, ensuring that employers couldn’t decide to hire or fire you, and health insurers couldn’t decide whether to issue a policy, based on DNA. But lawmakers carved out a host of exceptions. Insurers offering life, long-term-care, or disability insurance could take DNA into account. Too many high-risk people in an insurance pool, they argued, could raise prices for everyone. Those exceptions are why an insurer was able to deny Bill a long-term-care policy.

Technically Gattaca is off the table at least for health insurance and employment.

Since this is focusing on US law: You cannot be denied health insurance based on the outcome of a genetic test, even in the pre-ACA days. Back before the ACA, you COULD be denied insurance once you have a manifest disease (which would then be considered a pre-existing condition.)

https://en.wikipedia.org/wiki/Genetic_Information_Nondiscrim...

However, "The law does not cover life, disability, or long-term care insurance, which may cause some reluctance to get tested."

Cmd+F eug

Are we using "genetic discrimination" now? I thought we already had a perfectly serviceable word.

>Bill doesn’t have ALS. He’s a healthy 60-year-old man [...]

The word you're thinking of isn't even applicable in this case. At 60 year old, the chances of him passing on genes is highly unlikely. Denying him insurance might suck for different reasons, but it's hardly going to affect the gene pool.

> At 60 year old, the chances of him passing on genes is highly unlikely.

Better than even odds is "unlikely" by you?

> JUNE 13, 2019 – About 61.6% of men (74.7 million men) age 15 and over are fathers, and of those, 72.2 million men have a biological child, according to a new Men’s Fertility and Fatherhood: 2014 report released today by the U.S. Census Bureau. [1]

[1] https://www.census.gov/newsroom/press-releases/2019/mens-fer...

The poster wasn't talking about men over 60 that are fathers, it was men over 60 who will likely have another child. Your statistics drop from ~62% of men who father children to ~0.1% of men over 45 who father a child (and undoubtedly that goes to almost 0% after 60).

You missed the point. He might have had kids back when he was 25 or whatever, but denying him insurance when he's 60 is like closing the barn door after the horse has bolted.

Fair enough; on review my argument was indeed not on point. The perils of commenting while distracted, I suppose.

Eugenics is about improving the gene pool. Genetic discrimination is about making more money.

Only get tested anonymously for such sensitive tests, not the regular way.

And then a family member uses a non-anonymois service. Now you have to hope that those two never end up in the same pile of data, and our experience says that it's an inevitably for that to happen at some point.

Anonymous testing also seems very limited in availability.

When the lab does a specific gene test, they don't do full genome sequencing. I don't know why this is difficult to understand.

Even if a family member does the same test later, the same logic applies. The two results can't then be linked because their full genomes were not sequenced, and wouldn't be cost effective to sequence anyway.

Your genes are the mother of all PII.

When they do a specific gene test, they don't do full genome sequencing. I don't know why this is difficult to understand.

man we're really heading for that corpo cyberpunk dystopia, huh?

Wait, hol'up, GATTACA was suppose to be a work of fiction, not a model to implement IRL. Stop the planet, I wish to get off.

> Bill’s family had always thought it was a freak coincidence that his father and grandfather both had ALS.

Bill's family isn't too bright.

> An ALS specialist ordered Bill a DNA test.

... and Bill took it, which shows that Bill isn't too bright either.

Plenty of smart people are not experts on chronic diseases and trust what their healthcare providers suggest. There’s no need to be rude about it.

It has nothing to do with being an "expert on chronic diseases", and everything to do with not getting yourself formally diagnosed while you're applying for insurance.

I must confess this does not seem to be a problem to me. Private insurance is not meant to be a welfare product. It is meant to be a risk transfer. In a competitive market the expected value should be slightly negative to the consumer as the insurance company needs to make a reasonable profit. An important aspect of the transaction is information symmetry. If you knew you had a terminal disease and only 3 months to live and could buy a $1 million life insurance policy after finding out the information and had no obligation to share the diagnosis with the insurance company, life insurance companies would all go bankrupt. If they raised their rates high enough to cover this scenario, non-terminally ill people would never be able to afford it (significantly negative expected value). This is the same issue with health and long term insurance. Once the genetic test is completed and the individual realizes they have a higher chance of getting ALS, the rate for their specific insurance should go up. They have a greater chance of having it pay out.

Any other method either leads to bankrupt insurers. In my opinion, what Bill should have done is bought the long term care BEFORE he had the genetic test done.

What we absolutely shouldn't be providing to insurers is tech that gives them an arbitrage over customers, whereby the risk asymmetry makes their product valueless.

Even today most insurance is a scam to meet a "compliance" need for something else. that is, they have managed to get their product mandated, and it is a negative drag on the economy. They are rentiers who provide data and indirect tax revenue, and they do just fine thank you.

This idea that insurers will be bankrupted by perverse incentives assumes a binary outcome, and ignores that insurers have operated without genetic information for a few centuries and yet somehow the industry persisted, and if we deprive them of it they will not survive. Please, it's time insurers had some skin in the game.

In other words private insurance is unable to make a profit while providing value to all customers. There's a word for businesses like that...

A business? I'm not sure why you seem to have the impression that businesses should serve any and all customers, even at a loss to them.

They don't have to accept everyone as customers - subject to laws - but if they don't provide value to everyone who they take as customers, they're a shitty business.

>but if they don't provide value to everyone who they take as customers, they're a shitty business.

What does this even mean? Not everyone has to buy from every business. If consumers aren't deriving value from a business, they can just refuse to buy said product/service. It'd be great if a business's TAM is everyone, but the fact that some people won't get value is hardly an indictment. I don't like fishing. You'd have to pay me go on a fishing expedition. In other words, a fishing gear business won't provide value to me. If I go against my interests and buy a bunch of fishing gear that won't provide value to me, that's hardly an indictment of the fishing shop.

Considering that a few minutes ago you made an argument which only holds if your interlocutor ignores that time exists, I think you'd be wise either to reconsider your precepts or declare your interest.

>Considering that a few minutes ago you made an argument which only holds if your interlocutor ignores that time exists,

???

It's unclear how that has to do with this comment.

>I think you'd be wise either to reconsider your precepts or declare your interest.

I'd think you'd be wise to write a more cogent argument rather than vaguely gesturing at my prior comment, or implying I have a conflict of interest.

Insuring companies could mandate DNA tests before setting the contract price. As they already do with blood tests and ECG.

Health insurance is not welfare - IN THE USA. With universal health care, it goes without saying that society as a whole covers for the people that are more at risk.

Seems like insurance companies could make a tidy profit by requiring all of their customers to get genetic tests, and then strategically deny those with high risk, and for the rest, raise their rates to unaffordable levels right before they hit the statistical age where the condition in question begins.

Wouldn't surprise me if that ends up being a late stage capitalism strategy.

>raise their rates to unaffordable levels right before they hit the statistical age where the condition in question begins.

>Wouldn't surprise me if that ends up being a late stage capitalism strategy.

How is your hypothetical any different than being able to buy car insurance 0.1s before a car crash? Sure, it'd be great for the driver, and it'd certainly be bad for the profits of the insurance company, but it'd be absurd to characterize it as "late stage capitalism".

I'm saying that you get a health insurance policy, and the company requires you to submit a genetic test. Maybe you get that policy at age 30, but you have a genetic marker that, on average, means you will develop an expensive condition at an average age of 55.

So you pay premiums for 20 years, but starting at age 50, your rates start to seriously climb. They continue to climb until you're priced out of keeping the insurance and have to drop the policy before your condition comes in, and nobody else will take you now.

Besides, the taxpayers end up bailing out these companies constantly. The government is not going to bail out a random patient.

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