Slashdot Mirror
My Genome, My Self?
theodp writes "After baring his DNA for the world to see, Steven Pinker follows up in the NYT Magazine with his take on the coming era of consumer genetics. Pinker comes away less wide-eyed than Time Magazine about the current predictive ability of $399 genetic tests, but is convinced enough to opt out of learning whether he has a gene that increases the risk of Alzheimer's and believes that genetic-testing-for-the-masses may hasten the arrival of national health insurance ('piecemeal insurance is not viable in a world in which insurers can cherry-pick the most risk-free customers'). Pinker believes that personal genomics is just too much fun to ban, but for now suggests: 'if you want to know whether you are at risk for high cholesterol, have your cholesterol measured; if you want to know whether you are good at math, take a math test.'"
The thing is, you seem to parse the words and glean some meaning, but the thing is, you miss the point entirely.
Health insurance is a way of sharing risk, a form of solidarity. It is based on the insight that nobody is at fault for certain ailments, so in a society which wants to give the same basic opportunities to everybody, it is our duty to help those who, through no fault of their own, are burdened with sickness or injury. Making people with unfavorable genetic dispositions pay a higher price for health insurance is the opposite of the purpose of health insurance.
That this article will be tagged GATTACA.
All reasons aside, if you get a genetic test right now, you're screwed. Why?
There is no genetic rights. Businesses can exclude you from working for them due to it. Health insurance can disclaim all the "bad gene" illnesses, that is if they accept you at all. The government can pidgeonhole you in some god-awful plan in which you cannot escape.
And if you hide the fact that you were tested, or hide the test results, you are committing insurance fraud, or can be dismissed, with prejudice, for withholding vital employer facts.
And you thought poppy roll buns and drug tests were bad...
Sure, health insurance as a business model is viable when businessmen can eliminate risk from the insured pool. It just isn't viable as a way to care for a society. I think that's the point that was being made. Costs are distrubuted in insurance because you get a very wide pool of people involved, and everybody pays in. OTOH, if you get genetic segregation of health insurance plans, you have only very risky people in a particular pool, and they all have to pay very high rates. If they can't afford that, then you wind up with a bunch of people dead, which is a higher cost to society than a few extra dollars for insurance.
I agree that most people aren't interested in "health insurance." People want health. Health care, medical care, to be healthy. Health insurance is just a particular way to try and reduce the potentially extreme personal costs of getting health. And, once you get a completely nationalised health system, you effectively have a system equivalent to insurance with the largest possible pool. You pay taxes instead of premiums, but the risk is distributed through the entire society, so the people with the lowest risk probably pay slightly more as tax, but the people with the highest risk pay substantially less. (Of course, that assumes that the *for profit* health insurance companies don't actually make a profit any higher that the cost of government stupidity, while in practice the profits of doing health insurance tend to be enormous. This is likely an invalid assumption, no matter how cockheaded the government implementation is.)
Perhaps what you said is true for a co-op, in which everybody in the co-op does for each other.
However, if we talk about the USA Medical Insurance companies, they exist for pure profit and nothing else. If they fail to treat you within the allotted time, you die. Shucks... guess we keep your money you paid for insurance services.
In theory insurance is about customers sharing the burden of risk, not insurance companies raising their profits by mitigating risk. In practice, it's exactly the opposite.
Insurance, after all, is about mitigating risk, and a fuller knowledge of one's exposure to risk is a good thing.
MEDICAL insurance is, to most people, actually all about being able to afford medical treatment. Knowing your "risk" in this situation unfortunately can often only lead to you being denied coverage and subsequently NOT afford the services you need more.
It is, however, some expression of socialism.
Now that the Republican Party is passing out of power in the US we can expect that there will be a good deal less socialism, so whether or not it is desirable (I believe mostly not) there is going to be a good deal less of it now that the more liberal Democratic Party is in control.
I've never been clear exactly WHY Americans call their Socialist Party "the Republican Party". This is the party that has overseen massive growth in government both in responsibilities and costs, intrusive imposition of the federal government into areas normally reserved for the states or the people, and huge transfers of risk "in solidarity" from private individuals and organizations to the public.
It has capped all of this by actually taking ownership of significant parts of your financial system, which must in today's world be counted as firmly amongst "the means of production." Now that the liberal Democratic Party is replacing the socialist Republican party perhaps free market solutions will be prescribed for some of the things that ails the US, like allowing badly-run businesses that make products no one wants to FAIL.
Blasphemy is a human right. Blasphemophobia kills.
Health insurance is a scam pushed on the masses through Federal tax loopholes. You don't need health insurance for MOST of your health care needs. I have health insurance for BIG stuff, hence me HUGE deductible (5 figures). I pay very little for health care, going to a cash-only doctor who asks for an up front fee annually for unlimited visits and some basic yearly lab tests. He doesn't even take insurance, Medicare, or credit cards. He's also available for house calls.
Genetic testing for predispositions will likely give people options to fight the parts of those possible diseases that nurture (lifestyle) causes, instead of just pure nature (genetics). As more people are prediagnosed, it is wise for insurers to drop them. Here's the thing, though: if insurers drop too many peoole, doctors will have to find ways to treat them, or the doctors will be out of work.
The number of doctors leaving the world of insurance and Medicare are growing. It's a good thing. They can treat you cheaply ($35 per visit, cash on the barrel), and can spend time with you helping you make choices to work towards a healthier life. It's not about taking drugs, sometimes, it's about fighting the diseases before they're serious. MANY diabetics could have prevented the disease had they known they had a predisposition. Not all, I understand, but many (see: fat diabetics). The same is true of other diseases.
As more people lose health insurance and find options for cheaper health care (it is out there, really), genetic testing will make it easier for us to work with our doctors to find ways to avoid the tragedies. We're not healthy people, because we rely on health insurance rather than preliminary lifestyle adjustments before we get sick.
Wash your hands after touching sick people. Cut back on excessive drinking and smoking. Wear a condom. Don't eat too many sugars or starches. Do some exercise. It's not so hard.
The big late-age diseases, Parkinson's and Alzheimer's, are great to diagnose risks early. Then you can SAVE YOUR MONEY when you're young to prepare for the care you'll need when you're old. Don't pass it off to insurers, save for it yourself.
Or are you too busy buying the latest video games or blowing it on a weekend of drinking that you won't remember in 6 months?
The thing is, you seem to parse the words and glean some meaning, but the thing is, you miss the point entirely.
Not entirely unlike human genomic research :)
And, once you get a completely nationalised health system, you effectively have a system equivalent to insurance with the largest possible pool.
Actually, no, because there is virtually no risk involved: EVERYONE gets sick, and EVERYONE dies, and about half of EVERYONE's health care costs come in the last six months of life.
Although costs vary, they don't vary by that much, although the tail of the distribution is long. See figure B1 in this report on Canadian health care costs to see the actual distribution. For something over 70% of the population the average cost of a single hospital stay is less than $10,000, and virtually everyone has a couple of those stays in their lifetime (I've had one despite being in extremely good health generally.)
This is utterly unlike true insurance models--auto, home and term life--where the majority of people who pay premiums never collect a claim.
It is interesting to note that both the Canadian and American health care systems use insurance models, and suffer from similar problems of access and spiralling costs. I believe this is due to the inherent inappropriateness of an insurance model for a service that everyone will need and everyone which has a relatively low variance of total payouts.
A reasonable model of health insurance would deal with catastrophic costs only, say in excess of $10,000 per hospital stay as indicated by these data. As not everyone falls into that category, one could actually use insurance to spread RISK, which is not really possible under an "everyone pays, everyone benefits" model because the tails are not that relevant to the overall cost of the system, so you basically have a situation where there is very little risk to be spread (closer analysis of the numbers could contradict that, but that's my impression from a first look.)
Blasphemy is a human right. Blasphemophobia kills.
The Dirty Little Secret is this. Everyone has a price tag. Be it from the private sector, or public Government.
Tell me, would both of these entities spend $1,000 to save your life? Cool. What about a Million? How about a Billion? Would they dare spend a Trillion on your life?
The moment you start negotiating the price for a single human being (in whole or in part) is the moment the argument still stands. We ALL have a price tag on our life.
So, what's the big deal about Insurance companies making a profit. Immoral yes, but also to be expected.
Life is not for the lazy.
If you can test "in utero", you can have your cake and eat it too. If the fetus is going to result in a disaster, a quick D&C is preferable to a lifetime of crap.
Of course, this has social implications - the biggest one being that, over time, the average "genetic quality" of "true believers" - fundies who are against abortion, will trend lower than the population at large. Considering some of the mouth-breathing, knuckle-dragging moronics displayed in the last election, we've already gotten to the point where the effect is visible.
3-4 more generations ... it'll sort itself out. Just keep telling yourselves that God really wants you to breed kids that will live a shortened, painful, and meainingless life. Stupidity, like intelligence, is partly genetic.
Kevin Smith on Prince
1. Prenatal genetic testing.
2. Genetic counseling for prospective parents.
3. Actuarial estimate of lifetime healthcare costs at birth.
4. Mandatory front-loaded health savings accounts, funded by income withholding, until the amount saved in the account is equal to the amount necessary until end-of-life medical care, based on actuarial estimates.
5. Parents pay into the account until the child reaches adulthood, then the person covered continues until the account is fully funded.
6. Account holders can use their health savings account on any recognized treatment required, but reimbursement is limited to the rate set by the government. For example, if the limit is $5000 for a particular treatment, and the patient spends $10,000, the remainder is paid by the patient directly. This prevents draining the account, either by unscrupulous doctors or by fraud.
7. Shortfalls for necessary treatment are covered by the government, but treated as a loan with interest.
8. Money left in the account is passed on to heirs, while shortfalls are taken out of the estate in probate. Any remaining shortfall is covered by the government and paid through taxes.
9. Actions that increase medical risks (obesity, smoking, excessive drinking) are handled by increased payment into the health savings account. Actions that decrease risks, such as maintaining healthy weight and regular checkups result in lower amounts withheld for the account. Actions that benefit the community -- organ donor cards, blood donation, willing their body to medical science, etc -- get a bonus put into their account.
Of course, this won't happen as long people prefer to pass healthcare costs to the next generation in budget deficits, rather than paying for their own care.
I used to work as a contractor for the George Church lab. My supervisor was a student of Church's. Church was his boss. I was working on bio-informatics (if anyone cares, I can tell you some tricks for regexp-searching of genetic sequences).
My family was under extreme financial duress. In light of that knowledge, my supervisor (tells me, at least) that he took my situation to George and they came up with this: "Sign up to be one of the first 10 PGP subjects. Give us all of your medical records from the past and into the future. Agree to have your sequence published. We think we can get Harvard to agree to pay for your medical insurance for life. Don't you think your family deserves for you to make that trade-off?"
I said, flatly, "no." I pointed out, among other problems, some severe technical problems in the line of sequencing research we working on. Ultimately, we (me and the lab) part ways on less than amicable terms after this.
I think these people are scum.
They were eager to exploit my poverty as leverage to make me a human subject to rather dangerous experimentation based on highly dubious scientific claims - and they punished me for dissenting from this plan, as nearly as I can tell.
-t
I am young and in good health. Right now, I could not afford a $10k hospital stay -- yes, eventually I could save up for it, but right now I can't. I can, however, afford an insurance premium that will cover it. As mentioned, I'm young and in good health, so that premium isn't terribly pricey. What would you have me do?
I'll just show up with my steel-clad genes and live an extremely unhealthy life style, then use my health insurance funds to undo the damage. Take THAT "the system"!
Help fight spam
>I have health insurance for BIG stuff, hence me HUGE deductible (5 figures).
Bullshit.
Im only 33 and need insurance. My sleep apnea machine costs a few thousand dollars. No "emergency" insurance covers that, yet SA is as serious as anything else. Toss in the sleep studies and my insurance probably paid out 6 or 8 grand. I would have lost all my savings and more if I had "emergency" insurance only.
I used to be poorer and had no insurance and pretty much begged doctors for the "cash rate." All my medicines were samples. I barely scraped by and I got lucky. I was young and healthy. No major accidents. Now in my 30s I cannot do that. No way.
You sure as hell are not having a baby safely by paying cash. No emergency insurance is going to cover pre-natal, delivery, post-natal, etc.
>Wash your hands after touching sick people. Cut back on excessive drinking and smoking. Wear a condom. Don't eat too many sugars or starches. Do some exercise. It's not so hard.
Yeah, youre a moron. I do all these things. Kids born with diabetes arent going to exercise it away. Youre not going to fix a broken leg with happy thoughts. Not eating a twinkie doesnt cure a MRSA infection. Not drinking beer doesnt fix a rotted tooth.
>Then you can SAVE YOUR MONEY when you're young to prepare for the care you'll need when you're old.
My dad's CPOD and Alzheimer's treatments are in the 5 digits. In 10 years its going to be well over 500,000. Thats a lot to save on top of retirement.
How old are you? Some college student who has yet to grow up and see how your body falls apart when youre older? Its all downhere from here. If all of Europe can do national healthcare then so can we. Dont let being "college liberatarian" make you more ignorant than you already are of health matters.
Dude, you're full of shit. $35/visit, eh? Ya. So assuming the doctor's day is full of patients (no gaps) and each "visit" is 30 minutes the doctor makes $70/hr. Now you add in business taxes and he makes ~$50/hr, maybe less. Then you factor in office space and ... oh fuck he's losing money and we haven't even factored in equipment, supplies, other staff (let's face it if his day is full of patients he's going to need at least one receptionist), etc, etc, etc.
Now as to saving for your own medical care. That's nice and all but unrealistic. For one everyone has high medical costs when they are old. But only say a quarter of the population is going to have a real need for major medical treatment before they are old. And guess what... Those who are unfortunate to need such medical treatment are likely to be needing well over $100,000 in services. The average *FAMILY'S* income in the US is what $45,000/yr. I'll let you do the math on that one.
That isn't the problem. The point is that they agree to accept a monthly payment in exchange for anteing up with MORE money if needed. Statistically they come out on top anyway, unless a plague happens. The problem is when they decide to break their agreement and not keep up their end.
How do you kill that which has no life?
Dude, you're full of shit. $35/visit, eh? Ya. So assuming the doctor's day is full of patients (no gaps) and each "visit" is 30 minutes the doctor makes $70/hr. Now you add in business taxes and he makes ~$50/hr, maybe less. Then you factor in office space and ... oh fuck he's losing money and we haven't even factored in equipment, supplies, other staff (let's face it if his day is full of patients he's going to need at least one receptionist), etc, etc, etc.
Google: Cash Only Doctors. It's a fact. Most doctor visits do not last long. A decent doctor can see 8 patients in an hour for the basic checkup, cold, or other minor ache or pain. I also pay an annual fee that covers joining the clinic.
Some cash-only doctors actually get tips, too. No joke. I know of 2 AAPS doctors that earn more than their annual billing. Most doctors who accept insurance earn far LESS than their annual billing because of the insurance haggling, red tape, and administrative costs.
Now as to saving for your own medical care. That's nice and all but unrealistic. For one everyone has high medical costs when they are old. But only say a quarter of the population is going to have a real need for major medical treatment before they are old. And guess what... Those who are unfortunate to need such medical treatment are likely to be needing well over $100,000 in services. The average *FAMILY'S* income in the US is what $45,000/yr. I'll let you do the math on that one.
Again, you can blame this on insurance and public health programs that drive the cost of medical services up, combined with Congress colluding with the AMA to keep the number of doctors graduating down. It's like education: when government started subsidizing school loans, the cost skyrocketed. Get government out of health care, and education, and the costs will DIVE.
If someone has a great need for medical treatment that is expensive, they use INSURANCE. I tried to find an insurance policy with a $100,000 deductible, but they don't exist. I pay, for EXCELLENT emergency treatment, about 20% of the cost of a typical smoker my age. Why? Because of my high deductible. I buy generics when I need any medication.
The more we create third parties, the more prices go up. It's a simple financial fact.
So, what's the big deal about Insurance companies making a profit. Immoral yes, but also to be expected.
It's a violation of human rights when they have a monopoly on medical care. We have a right to "life". Even felons are entitled to medical care, but not free people without coverage, and no-one is obligated to cover you, but for most health issues noone will treat you in the US without coverage. Catch-22.
If you don't believe they have a monopoly, perform this experiment: write out a bogus identity on a sheet of paper. Then dial every dentist in your area and try to get an appointment to get an infected tooth extracted sometime in the next six months, but lie and tell them you have no coverage. The result will be instructive. An infected tooth is a life threatening situation you can't get treated in an Emergency room. I know - I've tried.
We need to break the monopoly on coverage for care if we are to have a chance at a humane system.
Help stamp out iliturcy.
[W]hat good would "normal" cancer test be if it detected 100% of cancer cases, but also, for every one detected, falsely marked 3 others as having cancer when they didn't.
We do have a lot of data on how society in general (and the corporate world in particular) deals with such data. For example, ten years ago the two most common HIV tests had 10% and 5% false-positive rates. There was a lot of PR to reassure people that this wasn't important, but the data said otherwise.
Consider the math with a simple example: You have a test population of about a million, of which roughly 1000 have HIV. The better (5%) test would show 51,000 positives, 1000 true positives and 50,000 (5% of a million) false positives.
This in itself should make you cautious. But consider how many employers and insurance companies dealt with it. They had forms that asked whether you have ever tested positive for HIV. If you were one of the 50,000 false positives, and later tests showed that you didn't have HIV, this didn't matter. There's no place on the application form for that information. For the rest of your life, you have tested positive to HIV, and to not mention this is fraud.
Actually, in most cases, the 10%-false-positive test was the first used, so 1/10 people who had that test are now and forever among the group that have tested positive for HIV. Further testing with other tests won't decrease this number; it can only increase the percentage that have tested positive. So the fact that we have better HIV tests now is mostly irrelevant to those who tested positive 10 or 20 years ago. They still have it on their medical record, and they legally have to admit it, despite the results of later tests.
Now, it's true that there are corporations that are more responsible than this. But as long as a significant portion of the corporate world treats false positives this way, the sensible approach is to avoid any tests that have a nonzero false-positive rate.
And note that I haven't mentioned the possibility of fraudulent positive test results. This is a very real worry when the legal system is involved, as with blood-alcohol and polygraph tests. Those require a different sort of defensive approach.
Those who do study history are doomed to stand helplessly by while everyone else repeats it.