[DecayingOrganic]

Just because the benefits of sharing DNA data appear large, doesn't mean we should take potential drawbacks lightly. Imagine this: a future where a specific gene is linked to hard work. Companies start screening job applicants based purely on their genetic makeup -- if you don't have the gene, you don't get the job. Or even more worryingly, imagine the government starts surveillance on a group of people with a particular gene, claiming they're more likely to commit a certain crime based on some obscure study. It would lead to moral and ethical havoc. DNA data might not seem worth protecting right now, but unchecked, the misuse could be catastrophic.

[AndrewThrowaway]

Medical insurance - oh you have cancer/hear attack/etc gene. You premiums skyrocket.

Job opportunities - oh so sorry you have bipolar gene...

Dictator governments - oh your genes are shit so you are not allowed to have kids.

[lotsofpulp]

In the US, it has been 13 years since the PPACA restricted premium pricing to only a handful of factors:

https://www.healthcare.gov/how-plans-set-your-premiums

>Under the health care law, insurance companies can account for only 5 things when setting premiums.

>Age: Premiums can be up to 3 times higher for older people than for younger ones.

>Location: Where you live has a big effect on your premiums. Differences in competition, state and local rules, and cost of living account for this.

>Tobacco use: Insurers can charge tobacco users up to 50% more than those who don’t use tobacco.

>Individual vs. family enrollment: Insurers can charge more for a plan that also covers a spouse and/or dependents.

>Plan category: There are five plan categories – Bronze, Silver, Gold, Platinum, and Catastrophic. The categories are based on how you and the plan share costs. Bronze plans usually have lower monthly premiums and higher out-of-pocket costs when you get care. Platinum plans usually have the highest premiums and lowest out-of-pocket costs.

[paws]

As a generally healthy person it's very disappointing that catastrophic plans are only available for under 30s. [0] For me it makes the most financial sense to pay out of pocket for incidentals/annuals, but be covered for catastrophes e.g. get hit by a bus and wake up in a hospital.

What magical event happens to people at age 30 that led the legislators to ban catastrophic? Would love to see the actuarial data on that. I have no knowledge/evidence of the reasoning but to me it definitely smells like lobbying.

[0] https://www.healthcare.gov/choose-a-plan/catastrophic-health...

[lotsofpulp]

I imagine this was a political compromise to let politicians advertise the availability of low cost insurance plans for low earners like young people in jobs without health insurance so they were not hit with the tax penalty that used to exist for not having health insurance.

Over 30 is likelier to be making more money and in jobs that do subsidize health insurance so they are likelier to buy it. And since the whole scheme is actually a mechanism to tax, you cannot let everyone opt out of the tax.

[everybodyknows]

>>Tobacco use: Insurers can charge tobacco users up to 50% more than those who don’t use tobacco.

Wondering what fraction of smokers know that, and are lying to their doctors about it. Inappropriate testing or treatment being a possible result.

[xxpor]

It's pretty hard to hide cigarette usage (smell, color of teeth). Vaping is likely to be much easier to conceal though (does that count as "tobacco" though?)

[bugglebeetle]

The age one is completely insane considering the amount of unchecked age discrimination that American employers engage in. We decided to fire Bob because he’s 51 and it’s cheaper to employ a 27 year old. Oh Bob, sorry, BTW your market place plan is now also $1500 a month.

[lotsofpulp]

Bob, however, did not have to pay for older people’s healthcare during the 1990s and 2000s.

Also, as an fyi, New York and Vermont do not allow age as a factor in pricing, and Massachusetts restricts the age rating factor to 2 instead of 3.

[bugglebeetle]

Everyone pays for everyone else’s healthcare, whether it be insurance pools, Medicaid, CHIPS, Medicare, etc. In America, we just do it in an especially dumb, cruel, and expensive way because it makes some assholes a lot of money.

[lotsofpulp]

We do it that way so “we” can have lower taxes.

We is in quotes because various demographics/political tribes want to pass the hot potato.

The beauty of the health insurance system is it allows you to deliver differing qualities of healthcare to different voter groups.

For example, high voter participation groups like old people can get Medicare that pays providers more and hence more providers are available. And Medicaid for poor people on the other end that pays much less and has stricter rules on prior authorizations. And you can give Senators healthcare that pays providers more than other federal employees, and so on and so forth.

I actually find it impressive in some sense.

[tossawayone23]

Life insurance doesnt apply to obamacare mecs.

[lotsofpulp]

The comment I replied to specific medical insurance.

When governments restrict insurers underwriting criteria, they are providing a subsidy from one subset of the population to another. I think those are best accounted for as taxes and government benefits.

[blunder_chess]

In the United States, my understanding is that your medical & employment discrimination scenarios are already illegal due to the Genetic Information Nondiscrimination Act of 2008.

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

[lrvick]

Because large corporations have never broken laws before?

Or bribed politicians to change them?

[macNchz]

> Or bribed politicians to change them?

There was already an effort to weaken this law in 2017. It didn’t pass, but if corporations are lobbying for loopholes it would be entirely unsurprising to see some slip into future legislation. https://www.vox.com/policy-and-politics/2017/3/13/14907250/h...

[eliasmacpherson]

stealing is illegal, so I never lock my front door.

[HumblyTossed]

Keeps you from getting a broken window, so that’s probably not a bad idea.

If they want in, a locked door isn’t stopping them.

[genewitch]

In Louisiana, if you leave your car unlocked and someone takes it, it isn't GTA, its unauthorized use of a movable.

[hef19898]

The locked door makes all the difference for your insurance claim so.

[Chris2048]

Any law could be subverted via these justifications. "Why should I register my gun when the government itself breaks laws, and its politicians corrupted by bribes!"

[bonton89]

That just means they'll receive a small fine 15 years after it happens and the damage is already done.

[StableAlkyne]

They'll get sued immediately by everyone who is denied a job following a genetic screen.

There's a reason companies who require a physical or medical history (usually done to find pre existing conditions to protect against future workman's comp claims) do it after the job offer has been extended (it's risky to rescind an offer for no reason by the way) - if they did it before, every applicant with a disability (and their pro-bono lawyers taking a slam dunk case) who did not get the job would sue.

[concordDance]

> Medical insurance - oh you have cancer/hear attack/etc gene. You premiums skyrocket.

This is how insurance is supposed to work. It should reflect your actual risk levels.

Now, if what you actually want is socialised healthcare then implement that, trying to backdoor it via insurance gives you the worst of both worlds.

> Job opportunities - oh so sorry you have bipolar gene...

Then the company that looks at actual behavior rather than genes hires people slightly under market and makes bank. Then other companies start copying them.

[ekianjo]

> This is how insurance is supposed to work. It should reflect your actual risk levels.

Of course not. This is how perverse insurance works. Proper insurance systems work by pooling risks into large groups so that the few who are unlucky to have problems at a given point in time are covered.

The whole custom risk factor at the individual level is pure exploitation and a travesty of what insurance systems used to stand for.

[lostlogin]

> Of course not. This is how perverse insurance works. Proper insurance systems work by pooling risks into large groups so that the few who are unlucky to have problems at a given point in time are covered.

Have you just described socialised healthcare?

[ekianjo]

> Have you just described socialised healthcare?

No just regular insurance before insurance companies figured out they could make more profits by making individual customization, which should be completely forbidden by regulations in the first place.

[piperswe]

Socialized healthcare is insurance, so I guess?

[_heimdall]

I'm not sure that I follow. Whats wrong with insurance companies factoring in DNA markers to put people at risk of cancer or heart attack in a higher risk pool?

That's not a custom risk factor at the individual level. Its just using data they believe indicates risk to decide what larger pool the person gets put into.

[polygamous_bat]

You don’t even need DNA data do to that, just use race statistics to increase or decrease your premium! Or do you think that would be illegal?

[_heimdall]

I don't know insurance law well enough to say if that's legally discrimination.

Now if you're asking me personally, I dislike the insurance industry in general. Insurance shouldn't be required, legally or otherwise. At that point insurance companies can use whatever data they want to price policies, as long as the terms are clear customers would actually have a choice whether they want insurance or not.

[jjgreen]

Combine that with race extracted from x-rays and AI ... https://www.nibib.nih.gov/news-events/newsroom/study-finds-a...

[concordDance]

Companies use many forms of data to change premiums, many you don't have much control over (e.g. what area of the country you live in). Why is that wrong?

[dorfsmay]

So car insurances shouldn't account for past driving experience?

Are you talking private insurance or socialised risk mitigation?

The goal of private companies is to make profits. There is space and use cases for both models. Of course large private companies put efforts into making people believe that's not the case.

[lacrimacida]

Don’t compare car insurance with health insurance. Past driving incidents are perfectly okay to take into consideration for car insurance, some people need incentives to drive safely. But genetics is nothing people can change, it’s fixed.

[Chris2048]

This all assumes two perfectly definable categories of characteristic - fixed, unchangeable category, and incentiv-isable behaviour / changable category.

It's not always that clear e.g. genetic disposition to alcoholism is linked to actual alcoholism and related behaviours.

[dorfsmay]

I agree, and that's my point. Should we have private insurances for genetic based risks?

Is there a point of private health insurance?

[ekianjo]

> So car insurances shouldn't account for past driving experience?

Nope, they should not. That's exactly the kind of things that ends up bringing prices up for everyone in the end.

[polygamous_bat]

> So car insurances shouldn't account for past driving experience?

Do you understand why discriminating job applicants based on race/sex is illegal but not based on GPA?

One is something you were born with. Another is something that you did.

[lotsofpulp]

All the evidence I have seen points to “what you were born with”, including the parent(s), family, neighborhood, etc to be very heavily correlated with GPA.

[dorfsmay]

Should we private insurance on "something you're born with" based risks?

[evandijk70]

In the Netherlands insurance is provided by for-profit insurance companies. However, there are very strict rules - they are not allowed to refuse any applicant based on any medical reasons (including preexisting conditions), there is a list of treatments they have to cover, there are rules for the minimum/maximum deductible, etc.

I would not say that this is the 'worst of both worlds'. I actually think it has the best of both worlds, - namely coverage for everyone that needs it (benefit of social healthcare) and competition between insurance companies on price, convencience/reliability of apps, service, etc.

[Jefff8]

No, that isn't exactly how insurance works, and it would be almost pointless for individuals if it did work that way.

Instead, it works by bucketing risk. In the simplest form, everyone is in one bucket, ignoring individual risk. That means that all other things being equal (e.g. size and value of your house), despite you have low risk of your house flooding, you would be paying exactly the same premium as the person who who has very high risk because their house is built on a flood plain.

Of course people paying more for their risk than it warrants may see that as unfair - so insurers use more buckets - e.g. bucketing high, medium and low risks.

But there's a delicate balance here - for instance, insurers may just decide not to insure the high-risk category. Or even if they do, the premiums may be unaffordable or the insurance benefits substantially restricted. And the natural extension of categorizing like this is to put an individual in a category by themselves - and then to limit payout. Essentially making the insurance not any better than a savings account, and probably worse if you don't claim at the beginning of the policy, before there's a large pot in the savings account.

From the point of view of perfect capitalists, the insurers would like to insure people with negligible risk, for high premiums, for low benefits - to make the most profit. From a social-good point of view, we would like insurers to cover risk that people cannot control (e.g. genetic risk) for reasonable premiums and good benefits. Categorizing lives somewhere between these two - a kind of necessary un/fairness.

[concordDance]

> From a social-good point of view, we would like insurers to cover risk that people cannot control (e.g. genetic risk) for reasonable premiums and good benefits.

You're using the wrong tool for the job there, if you want people to be supported regardless of their actual risk levels then you should get socialised medicine rather than artificially restricting what factors insurance companies can take into account (and there will be plenty of information leakage from due to other factors they are allowed to consider correlating with the banned ones).

[funcDropShadow]

> This is how insurance is supposed to work. It should reflect your actual risk levels.

This assumes the relation correlation between genes and adverse health outcomes are actually known. By definition that ignores personal behavior and epigenetics.

If an insurance becomes to specific to the individuals it stops spreading the risk.

[Chris2048]

> Medical insurance - oh you have cancer/hear attack/etc gene. You premiums skyrocket.

Is it assumed that premiums will rise? If you get a package of, say, pension plan your lower life expectancy might lower the premium?

I think this is why certain motorbike cover is actually lower..

[InitialLastName]

(Potentially in some US states): Your biological material was found in the bio-waste can of a facility that was performing illegal gynecological operations. You're under arrest for the murder of a fetus.

[Symmetry]

In general, a person's performance in their job is the best evidence for their future performance, followed by tests you can give them, followed by their genes. That's not to say that there aren't pointy haired bosses who could be sold a load of snake oil on the subject but that's probably nowhere you'd want to work anyways. And with medicine pre-existing conditions are a much worse problem than genetics could ever be but thankfully in the US at least our existing laws seem to have that in hand.

[gurumeditations]

A lot of places already decide gay people shouldn’t have kids. This is in democracies. Gene scenarios not needed. Only straight supremacy.

[phero_cnstrcts]

With digital IDs becoming more integrated in daily life you would probably never even see the job posting.

[red-iron-pine]

you have genes for red hair, blue-ish green eyes, a facial structure that looks like X, or Y, and a skin tone of Z.

with a reasonable degree of accuracy you can then predict what that person looks like.

epigenetics and other factors make that something like a "best guess" approximation, but it is a good start.

[seydor]

sue the first two, get $$$. This is textbook discrimination

i avoid dictator governments , which do it anyway already, just based on phenotype

[lopis]

> sue the first two, get $$$. This is textbook discrimination

Ah but they did no wrong! They just licensed the AI du jur that functions pretty much like a black box, but just so happens to feed on multiple sources of data from dozens of data brokers. One of those brokers aggregates data from other brokers, including DNA data from DNA services.

Meanwhile, all the recruiter saw was "37% match" before reading your resume and moved on.

[squigz]

Don't wanna live in a dictatorship? Just avoid it, simple!

[ekianjo]

> i avoid dictator governments

If you are born in one you cannot really escape thats kind of a big design feature you know

[leoedin]

I don't think the first two are necessary a big deal in a western liberal democracy. We already have fairly strict legislation around data protection and selective hiring based on certain characteristics (like ethnicity - which is really just a much less accurate form of genetic classification).

There might be a period where we haven't legislated against that sort of stuff. But once we do there's going to be a pretty big paper trail if a potential employer or insurance provider is searching a genetic database for you.

Dictators? Yes, they could do that. But they could already send you to the gulag because of how you look, who you're friends with, what you said in the pub etc. It's another tool in their arsenal maybe, but it's not like they don't have a lot anyway.

[GuB-42]

Now imagine a future where not only we are screening job applicants based on their genes, that police targets a specific genetic profile, but we also mark people with the "bad" genes so that anyone can recognize them. Some sort of color coding, like white for good, black for bad...

Yeah... see where I am going...

Gene-based discrimination is not new, in fact, it used to be the norm. Now, it is called racism, and we are actually in a much better situation than we once were. Not perfect of course, but we have laws in place to limit such abuse.

If discrimination based on "non color-coding" genes is not already illegal in first world countries, I suspect the existing laws will soon be updated to reflect that once it starts being practical. And I think it will be more readily enforced than for traditional racism. Racism is a natural, quasi-instinctive bias that you actually have to fight against, because there is no way you can ignore the skin tone of the person in front of you, but you can simply not use a genetic sequencing test. Plus it sounds like eugenics, something that became kind of unpopular since the 1940s.

[boppo1]

>not already illegal in first world countries, I suspect the existing laws will soon be updated to reflect that once it starts being practical.

I'm not so sure. Racism was shown to be completely unsupported by science: https://en.wikipedia.org/wiki/UNESCO_statements_on_race?wpro...

There were a couple notable dissenters (some bigwig statistician iirc), but overall it was a clear consensus.

If it is shown that certain genes are causative of violent behavior, the legal situation might not shake out so cleanly. Already the debate has begun: https://www.newyorker.com/magazine/2021/09/13/can-progressiv...

[cbozeman]

You don't have to imagine it, it's 1997's Gattaca.

[GuB-42]

Gattaca is fiction, with more attention given to having a good story than to realism.

Which was a success, it is a good story, and a movie I recommend.

What I think is that Gattaca, like most good dystopian fiction feels much more realistic than it really is, almost visionary. It is by design, it is a reflection of real world issues that readers/spectators are familiar with at the time of the writing, pushed to the extreme, and our natural negativity bias tend to make us forget the parts where the story was wrong in its terrible predictions.

[nerdix]

This is excellent.

Anyone can lose the genetic lottery (and everyone might lose it in some way). Even if you're considered fine by the genetic standards of the day, you can never be sure that your future kids or grandkids will be. Everyone will know someone, a close friend or family member, that's been negatively impacted by the laws so it's much harder to boogie man or "other" them.

Those laws would be wildly unpopular and would never survive in a democracy or even a populist dictatorship.

[sojournerc]

"Gattica" is a great movie that runs with this. The entire society is built on separation on DNA and designer genetics.

[tick_tock_tick]

Gattaca while a great movie always rubbed me wrong as at the end it turns out society was "right" and he probably doomed the mission. His heart was "bad" it turns the whole movie from someone overcoming societal limitation to someone ruining the space mission so they can see space.

[renegade-otter]

"The poors who somehow got into this fine dining establishment through all the obstacles we have carefully constructed are really ruining the vibe here!"

The space mission may not be the perfect allegory, but that's just nitpicking. How many people watched Gattaca and thought, "Oh no! That crippled tool ruined the space mission! Not my tax dollars oh my stars!"

[vGPU]

> his genetic profile indicates a high probability of several disorders and an estimated lifespan of 30.2 years.

That seems to be a very valid reason to not send someone on a space mission.

[renegade-otter]

And many people get well from placebo medication. We don’t fully understand human willpower and its ability to overcome the cards we were dealt at birth. The whole movie is literally about how genetics is not destiny.

[lotsofpulp]

Just because the movie claims it does not mean it is true.

Genetics may partly, or even significantly, be destiny.

[vGPU]

Willpower won’t fix a congenital heart defect.

[jbjohns]

I thought the point was that society was completely wrong and was basically overhyping the thing they'd all bought into. They had decided their method was so superior that naturally born people wouldn't live past 30. He'd already well beaten that, outlived his parents and didn't seem sick now. Society was far removed from reality and somehow forgot that natural birth worked fine for all but very recent human history. I find this statement about how society works more compelling than the cautionary about genetic discrimination.

[adhesive_wombat]

Also a heart 10000 beats overdue is about 3 hours! Even a million beats is well under 2 weeks.

[concordDance]

The world is already GROSSLY, AWFULLY unfair due to genetics. This amount of unfairness is immensely larger than the amount that would be caused by genetic information being more widely available.

Making genetic information more widely available has likely benefits far far larger than the costs.

[RHSeeger]

The world is as unfair as it is even _with_ us pushing back a lot on sources of unfairness. If we didn't push back because "it's already unfair", it would add up quick and be a _lot_ worse.

[concordDance]

The idea is to make it less unfair by understanding genetics (which needs data) and then making future children with improved genes.

[Podgajski]

Can someone explain why they’re downing this? As Someone with schizoaffective bipolar disorder and Asperger’s, which is definitely affected by genetics because I seen in my genetics, I don’t see what the disagreement here is?

[cutemonster]

(I didn't downvote)

Can I ask, what would be your ideas about how DNA information could be used? For example, shared with the person themselves, and no one else -- so they know what the reasons can be, for problems they run into later in life.

Or do you see any government agencies that it'd be good if they had access to the DNA info? The health care system maybe? (If they didn't share the data against ones will, say)

[GoblinSlayer]

Asperger's syndrome is an advantage though, because it gives you a tendency to think accurately and practically.

[Podgajski]

I agree, but the other behaviors and sensitivities I have made extremely difficult in my life not because I couldn’t handle it, but because other people couldn’t.

[ThrowAway1922A]

At the expense of relationships and the ability to form them. Being on the spectrum is not a good thing, it seriously messes up parts of your life.

[GoblinSlayer]

You project, you need relationships with normies, not me. I can't have relationships with normies, and it's good, I don't miss them.

[ThrowAway1922A]

I can tell how young your are by this comment. Just wait until you get older, you will need them.

[seydor]

We already did these things, we discriminated against women, racial minorities, skin colors, and even more, religious minorities etc. We already have laws against these things, we never asked people to hide the color of their skin.

What's problematic right now is that only law enforcment has unrestricted access to the dna data. I actually want such data to be open source.

[RHSeeger]

> we never asked people to hide the color of their skin

We have a bunch of regulations around "you can't even ask the person about that", specifically because companies cannot be trusted not to discriminate based on it.

[hef19898]

Just take all the criminal cases in which DNA was used to convict innocent people. Now imagine that with a DNS database in the background as huge as 23andMe.

And of course selling DNA data was the idea from the get go...

[lotsofpulp]

Just take all the criminal cases in which DNA was used to exonerate innocent people.

Or

Just take all the criminal cases in which DNA was used to close cold cases.

[hef19898]

The age old question: how many innocent people we are ok with convicting in order to convict the guilty ones. Personally, I don't think a for profitbcompany should even play the smallest role in that.

[seydor]

if there is more data, the dna identification will be more precise and correct also. Ideally i want this data to be open source, and thankfull you can download your data

[hef19898]

You are aware that Gathaca wasn't a blue print to follow, right?

[seydor]

movies are not real life

[salawat]

Movies by definition are not real life yet.

Akin's Laws of Spacecraft design apply. If you want to have the biggest effect on how something shakes out become an artist.

And ideas have a flow. Nentally disturbed/child->Artist->Scientist/Engineer/Academic/Professional->Everybody else. Some other diversions may apply.

The mentally disturbed are the most sensitive to society at large's edge cases, but largely incomprehensible to everyone else due to divergent world view. The Artist breathes the surreal and unarticulated, in the practice of their work articulating that which defies the aggregate capability of the majority of society to manifest. That seeds the way for elucidation, exposition, and enumeration for the current flight of society's operant effectors, who implement it, which then trickles into the pool of common knowledge.

If you're seeing an artistic work in your life, and not keeping an eye out for it's implementations. You're running half-asleep to be frank.

[ThrowAway1922A]

You're right, real life is worse.

[mfld]

You can release your DNA with an open (source) license. I personally would be hesitant, similar as I would not open source my fingerprints, health records etc., even if it is forbidden to abuse them.

[bluefirebrand]

You just described the major plotline of the movie Gattaca.

We watched and discussed that movie in my Ethics of Engineering course in university.

Kind of ironic to me that the movie they used to try and teach me how not to use engineering for unethical purposes may be coming true today.

Edit: Wiki page for the movie if anyone's curious: https://en.m.wikipedia.org/wiki/Gattaca

Pretty good movie from what I recall. Some good discussions around ethics that came out of it.

[salawat]

I mean, everything poignant from my Ethics of Comp Sci has become status quo nowadays.

Using computers to generate imagery that is then deployed duplicitously by the person who asked for profit? Yup.

Ubiquitous surveillance and geofencing? Yep.

Artificial constructs for remote deployment of lethal weaponry? Yup.

Poisoning of the well of knowledge to make it more likely that one particular source gets visited rather than another? Yep.

Attempts by monied interests to divest themselves from the implied responsibility to hire in society through increased mechanization? Yep.

To be frank, I'm starting to take Ethics courses as societal statements of intent nowadays.

[sanatgersappa]

Or they might develop a "cure" that gives you the hard work gene, or remove your crime gene...there are 2 ways of looking at this.

[panta]

so that someone else can decide that if you don't have that hard work gene you are unhealthy and need to be "cured"? Nice dystopia.

[nintendo1889]

The German haplotype already has that. Just hire Germans for creative engineers or Asians for noncreative ones.