100,000 Californians To Be Gene Sequenced 176
eldavojohn writes "A hundred thousand elderly Californians (average age 65) will be gene sequenced by the state using samples of their saliva. This will be the first time such a large group has had their genes sequenced, and it is hoped to be a goldmine for genetic maladies — from cardiovascular diseases to diabetes to even the diseases associated with aging. Kaiser Permanente patients will be involved, and they are aiming to have half a million samples ready by 2013. Let's hope that they got permission from the patients' doctors first."
Damned sure glad... (Score:3, Insightful)
Re:Damned sure glad... (Score:4, Insightful)
Don't consider yourself safe just yet:
"This is a force multiplier with respect to genome-wide association studies," says Cathy Schaefer, a research scientist at Kaiser Permanente, a health-care provider based in Oakland, CA, whose patients will be involved...
Kaiser Permanente is meanwhile trying to expand its collection of biological samples to 500,000 by 2013.
While the scientists running the experiment are clearly doing this to actually advance research, and it will, I'm thinking someone at Kaiser is hoping this will pave the way for "You want health insurance? We just need to sequence your genome first. Oh, sorry, you're going to get Huntingtons disease. Good luck with that."
Re:Damned sure glad... (Score:5, Informative)
This is why we passed GINA: http://www.genome.gov/24519851 [genome.gov]
Re: (Score:2)
Can you assure me that there are absolutely no loopholes or ways around GINA that insurance companies could exploit? Can you assure me that insurance companies won't just disreguard GINA? If there is a loophole, insurance companies certainly have an incentive to find it and exploit it, and I know they would have no moral problem with doing so.
It's somewhat reassuring to know it won't be quite as obvious as my scenario, but one law doesn't make me trust insurance companies.
Re: (Score:2)
Ah, sorry, I was reading stuff that wasn't there...
Re: (Score:2)
Well, a lot of wasted efforts to circumnavigate the obvious solution - universal healthcare...
Re: (Score:2)
From TFA: " University of California, San Francisco (UCSF), with a $25 million, two-year NIH grant that tapped federal stimulus funds ".
That would seem to me to make all this research public domain, and prevent Kaiser from patenting any genes, holding any information proprietary, or selling it to drug companies.
While you can't legally discriminate (see GINA in this subtread), there are many other ways this study could end up benefiting Kaiser alone, or Kaiser in cahoots with some drug company unless there i
Re: (Score:2)
At least for this group, doesn't matter. At age 65+, they're all eligible for the kind of can't-be-turned-down everyone-pays-the-same-premium government-operated socialized health insurance that Congress seems to think would be a disaster for the rest of us.
Re: (Score:2)
At least for this group, doesn't matter.
Right, they do a pilot program first to determine how useful this will be before they do it on a widescale. Or they could.
Re: (Score:2)
>>I'm thinking someone at Kaiser is hoping this will pave the way for "You want health insurance? We just need to sequence your genome first. Oh, sorry, you're going to get Huntingtons disease. Good luck with that."
The nice thing about my health insurance through Kaiser is that they don't screen applications. You're charged an amount based on your age, and that's it. I think you have to fill out a thing about your existing conditions (they won't cover cancer if you have it already, I think) but that's
Re: (Score:3, Informative)
Re: (Score:3, Informative)
Citation?
In general, other than somewhat exaggerating the capabilities of non-European nations, you're correct - Europe wasn't the height of civilization back then. But don't undermine your own arguments by adding items of questionable veracity.
Also, note that even if China had been inclined to conquer Europe then, they'd have been unable to do so - the logistics situation would have been impossible.
Re: (Score:2)
It appears much of it was exaggerated. Kind of sucks, the book was a great read. So much for trusting books though. I've always been very good at verifying and fact checking things online just not in books. My apologies.
In any case my point still stands the Chinese did lots of amazing things. Even if they only sailed across a good chunk of the world rather than the whole
Re: (Score:2)
The GP's dates are a little off, but here's the standard starting point:
http://en.wikipedia.org/wiki/Zheng_He [wikipedia.org]
It's quite a poorly written article, even by Wikipedia standards; but good enough to get you where you want to go.
http://www.international.ucla.edu/asia/news/article.asp?parentid=10387 [ucla.edu]
Re: (Score:2)
If humanity originated in Africa and the first humans were black
Then you are also distantly related to a black person, and by your logic, you are the very thing you hate.
Bloody throwbacks :-(
Re: (Score:2)
There's some prior art, I'm sure of it.
But was it published?
Re:Damned sure glad... (Score:5, Funny)
That depends on how you define "publish." I know I have many copies of my DNA, and I've even distributed some of them.
Re: (Score:2)
Full copies of the DNA are distributed... only half copies are used.
Re: (Score:2)
Add the second component and you have a streamlined pension system.
Not sequencing (Score:5, Informative)
This not (gene or genome) sequencing. Rather, it picks up single nucleotide changes (SNPs). Still valuable information, but no new mutation will be discovered with this method.
Sequencing would be a couple of orders of magnitude more expensive.
Re:Not sequencing (Score:5, Informative)
Anonymous coward is correct. This is genotyping, which is orders of magnitude less resource-intensive than gene sequencing.
Genotyping | sequencing || driving down the highway | Lewis and Clark's journey
Sequencing is pathfinding (they are not doing this). Genotyping is exploring the path that you already know is there (this is what they are doing). On the sequencing front, there is currently a 1000 genomes project - a massive collaboration of worldwide importance due to its difficulty and expense. On the other hand, genotyping 100,000 people is done all the time (heart attack GWAS, etc). The two concepts are enormously different.
Re: (Score:2, Informative)
Parent is absolutely right. Just to illustrate the difference, here are some approximate costs for doing this in one patient:
Genotyping: $100
Sequencing 80% of coding genes: $10000
Sequencing entire genome: $60000
The Good, the Bad, the Ugly... (Score:5, Interesting)
The bad is that private insurance companies are likely to eventually *require* you to get a DNA sample, and possibly reject you if they determine your genes predispose you to old-age diseases.
Where it gets ugly, is that this will be yet another tool that could allow screening of unborn fetuses, and potentially selective abortions. I'm not personally against this. We're overpopulated anyways, but some people clearly don't like that idea.
Re: (Score:2, Insightful)
Which is one of the big reasons for single payer insurance and insurance that can't be denied. Single payer system would negate the benefits of excluding people based on their DNA, and instead would allow people who might have a chance of something going wrong to actually get insurance.
Re:The Good, the Bad, the Ugly... (Score:5, Insightful)
Re: (Score:2)
Why would anyone want that kind of coverage? What fool would buy it?
Re: (Score:2)
A slightly more pragmatic answer would be that people who were worried about acute problems -- accidents, the occasional cold, etc. -- might still buy insurance.
Re: (Score:2)
Well there are still accidents and other environmental hazards. There will be SOME utility in health insurance. Just not as much.
<humor>So of course they'll reduce their rates because their expenses have gone down. </humor>
Re: (Score:2)
This assumes they supply you with the details of why you were rejected.
"I'm sorry, sir, you've been rejected because of a genetic predisposition for Parkinson's disease" is a lot different than "I'm sorry, sir, you've been rejected because you may contract a disease."
Not having the details of what you might be in store for in your future means you can't just assume it's a life threatening disease. You have to assume it isn't life threatening but painful, debilitating, and expensive to treat before you can
Re: (Score:2)
Of course, in reality, this is just a good argument for ANY sort of "group insurance". Thats kind of the problem with one-off single insurance. You go to the ins company, and ask for insurance. They look at YOUR risk to insure you.
When I got my job, I got insurance with it. Working at this company is the criteria by which I got onto my plan. So there is no reason for the insurance company to see me as a greater risk than anyone else at the company, since they have nearly everyone here, its all about average
Re: (Score:2)
Thank you. I was wondering if I'd have to be the first to mention that.
Re: (Score:2)
The bad is that private insurance companies are likely to eventually *require* you to get a DNA sample, and possibly reject you if they determine your genes predispose you to old-age diseases.
Look at it on the positive side: consumers can get the same data too, and I'm sure that if they get accurate enough the people who don't actually need the insurance can either skip it completely, or go for cheaper "accident only" coverage. If the insurance companies tighten their grip too much and try to only sell to people who absolutely don't need it, they may find that they end up eliminating their customer base.
Re: (Score:3, Informative)
http://www.genome.gov/24519851 [genome.gov]
Re: (Score:3, Insightful)
And no company would ever break a law to increase it's profits.
Re:The Good, the Bad, the Ugly... (Score:4, Insightful)
Re: (Score:2, Insightful)
Re: (Score:2)
First, define overpopulated.
To me, a population is too large when its environment can no longer sustain the population. So, in many parts of the world, where people die of starvation especially, they are overpopulated. To argue that its a logistics problem is a fallacy. What if the entire earth were starving, would it be a logistics issue because we are not consuming the resources of a planet in a nearby solar system?
I personally think that we have already significantly overpopulated the earth, because w
Re: (Score:2)
You seem to be proposing moving large numbers of people from earth to some other planet, in order to save resources. How would moving large numbers of people save resources?
If you are not proposing moving large numbers of people, then those of us left behind are still left with the same problem we have currently.
So, sorry, I don't think you are addressing the problem.
Re: (Score:2)
Prove we are overpopulated.
I can't prove we are overpopulated right now, but I can prove we are either overpopulated now or will be in the near future.
Exponential growth is not stable in any finite system.
Re: (Score:2)
Yup - insurance only works in the absence of knowledge. If you could predict with 80% accuracy whether somebody's house would burn down, then almost everybody could get dirt-cheap fire insurance (which they wouldn't buy anyway since they wouldn't need it), and a small number of people wouldn't be able to afford it and would lose everything they have in a fire. The insurance companies would go out of business since nobody would bother buying insurance either way.
The only thing that would work once genetic
Re: (Score:2)
If you could predict with 80% accuracy whether somebody's house would burn down, then almost everybody could get dirt-cheap fire insurance (which they wouldn't buy anyway since they wouldn't need it), and a small number of people wouldn't be able to afford it and would lose everything they have in a fire.
Rather, the houses likely to burn down would be unoccupied, and probably demolished, and the remaining houses would be be insurable at much lower rates. Everyone wins. Well, some people would be out the cost of a house and need to find new shelter, but at least they won't be caught in a fire.
In the medical case, of course, you can't leave your "house"—but you can take steps to mitigate any diseases you may be genetically predisposed to. Analogies aside, however, by the time your genetics have been det
Re: (Score:2)
here is no reason that a poor person without insurance should have to pay $100 for a doctor's visit that costs $30 for Aetna (even if the poor person can haggle them down to $50 - assuming they are in the condition to haggle BEFORE the services are rendered).
FYI, a CVS Minuteclinic [minuteclinic.com] exam costs $62. You need no appointment, and they are open evenings and weekends.
Re: (Score:2)
"Predisposition to death." I'm really surprised that some insurance company hasn't tried this one yet.
"So, your great grand mother, how healthy is she?"
"Well, she died about 30 years ago"
[checks off box]
"And your grand mother?"
"She died just last year."
[checks off another box].
Re: (Score:2)
A possible upside to private insurance companies doing this is that if they accept you, you know you probably don't need it so bad after all!
Re:The Good, the Bad, the Ugly... (Score:5, Insightful)
Thereby making the cost of insurance prohibitive to those with genetic predisposition to serious, expensive-to-treat maladies. This works out exactly the same as denying those people insurance coverage, unless they are very wealthy.
This defeats the general purpose of medical insurance (which IS for the healthy to subsidize the sick).
From a libertarian standpoint (yours, I'm assuming, from prior discussions), why not just get rid of health insurance altogether? That's the only way to ensure that everyone pays their "fair" costs into the system. That seems to be what you're getting at, so why mince words?
People won't pay regardless the cost (Score:2)
People will take on car payments, get a new cell, or something else, all before paying for their medical coverage. If the cost of coverage interferes with their ability to buy something they want they will declare the cost of coverage too high. Yet they see no problem fifty plus per month for a cell plan, much more for family plans, will probably have cable tv and one or two car payments.
For a large number of people it comes down to the fact they prefer to live in denial of the need and are just hoping if
Re: (Score:2)
OR
You can DENY health care for those that AREN'T covered by insurance and can't afford to pay it.
As long as there are no consequences for NOT having Health Insurance, then the problem remains, and the system stays broken.
Now queue the whiny liberals "what about the children". These are usually the same liberals who whine about the very same argument when it is made by conservatives. Both sides use the lame "Do it for the children" argument.
FYI, that is a cheap way of simply ignoring the bigger problem, whic
Re: (Score:2)
For a large number of people it comes down to the fact they prefer to live in denial of the need and are just hoping if they hold out long enough someone else will pay for it, even if they tacitly acknowledge it will be through taxes that will increase and they will be paying it anyway.
Or perhaps they recognize that the "need" for insurance for most individuals just isn't high enough to warrant the cost? Insurance is a waste of money for healthy people unless they engage in somewhat dangerous activities fo
Re: (Score:2)
He didn't say "All people". That was your addition. He said, as you quoted, "People will take on...", which I tend to parse as "People will typically take on..." or "People will frequently take on...".
You can argue as to whether his assertion was correct, but there are a large number of examples that indicate he may be. Putting your own reading of his words into his mouth, however, is an illegitimate form or arguing.
Re:The Good, the Bad, the Ugly... (Score:5, Insightful)
From a libertarian standpoint (yours, I'm assuming, from prior discussions), why not just get rid of health insurance altogether? That's the only way to ensure that everyone pays their "fair" costs into the system. That seems to be what you're getting at, so why mince words?
Bravo. Any free market libertarian should not be using any type of insurance. Afterall, insurance is a form of wealth redistribution.
Re:The Good, the Bad, the Ugly... (Score:5, Insightful)
Any free market libertarian should not be using any type of insurance. Afterall, insurance is a form of wealth redistribution.
This demonstrates a profound misunderstanding of both the concept of "wealth redistribution" in respect to libertarian philosophy and the concept of insurance itself.
First, insurance is not "wealth redistribution" even in the limited sense described below, at least when it's not actually being turned into some sort of forced-"charity" scheme via regulation. The projected value of an insurance subscription is equal to the projected value of the premiums being paid (less overhead and the insurer's profit margin, of course, just as with any other service). You're neither subsidizing nor being subsidized by your fellow insurees. What you get from insurance—what makes it worthwhile enough to justify the overhead—is that people tend to prefer that their future costs be predictable. Insurance takes a high-cost, low-probability future event and, by pooling it with many similar events, turns it into a low-cost, predictable event in the form of periodic insurance premiums. Critically, risk is conserved with respect to each insuree; no one pays extra to subsidize anyone else's above-average projected cost (risk). In retrospect, of course, some will be compensated more than others depending on the actual circumstances, but ex ante no insurees can be said to benefit at others' expense.
Second, "wealth redistribution" is only a problem when it's involuntary. Donating to charity is perfectly consistent with libertarian philosophy, and something many libertarians do frequently. When libertarians speak negatively of "wealth redistribution" they're referring to redistribution by force, involuntarily, which is an entirely separate matter. The force is what makes it wrong, not the redistribution.
Re: (Score:3, Insightful)
Re: (Score:2)
Re:The Good, the Bad, the Ugly... (Score:4, Insightful)
From a libertarian standpoint (yours, I'm assuming, from prior discussions), why not just get rid of health insurance altogether? That's the only way to ensure that everyone pays their "fair" costs into the system. That seems to be what you're getting at, so why mince words?
Bravo. Any free market libertarian should not be using any type of insurance. Afterall, insurance is a form of wealth redistribution.
Many others have corrected you in basic terms of what insurance actually is, and when the redistribution of wealth is undesirable (i.e. when it's done by force).
I wanted to add one thing. Insurance of any kind is based on the principle of indemnity. This is a fundamental concept behind all forms of insurance. To summarize indemnity, it means restoring you to where you were (i.e. after a loss). It means that a policyholder does not profit from filing an insurance claim. If your car takes $5000 in damages from an accident, and your insurance company pays $5000 for your car, X dollars to cover your rental vehicle while your car is being repaired, etc., your net gain is zero. You are only paid because you incurred a covered loss, and are only paid the amount that the covered loss has cost you. That's indemnity.
Re: (Score:2)
THe purpose of insurance is to price risk and spread that risk among similar individuals. It's not supposed to force people to buy insurance that they feel they do not need. It's not supposed to be a system where everyone pays the same regardless of their risk. The problem is that the system as it is doesn't the least bit resemble such a system; it's full of fraud and people are heavily restricted in what they can actually choose in their insurance.
Re: (Score:2)
Calling "health insurance" an insurance is a misnomer and has been all my life. Certainly since the rise of the HMOs. Possibly before that you would have grounds to call it an insurance in the classic form. I don't really remember.
If you're going to pretend that now, all of a sudden, it should change to actually be an insurance plan... Well, ok, but you need to get rid of the HMOs first.
Remember how the Kaiser health plan started. An employer wanted to ensure that his trained workers stayed with him an
Re: (Score:3, Informative)
1. The 'like-risk individual' qualification -- I believe this to be an incorrect assumption on your part. There is no such thing as 'like-risk' -- the question is to what extent we can factor known risk factors into premiums.
2. Yet when you proposed adjusted premiums for ascertained variab
Re: (Score:3, Interesting)
There is no such thing as 'like-risk' -- the question is to what extent we can factor known risk factors into premiums.
The idealized model of insurance places individuals into different "pools" depending on their individual risk, with each pool corresponding to a specific risk and equivalent premium. It is assumed that there are sufficient individuals within each pool for things to average out. However, that's just an abstraction. In the real world risk is a continuous variable, so every individual would be in a separate pool (with no averaging). Instead, everyone pays into a single pool in proportion to their respective ri
Re: (Score:2)
No. The idealized model of insurance places individuals along a spectrum of individual risk, paying equivalent premium to their risk (for the ideal system you refer to; there are actually multiple ideal systems for insurance, since there are multiple possible goals of an insurance system, and I think you only consider one, due
Re: (Score:2)
This debate has seemingly devolved to an argument over word choices...
It doesn't matter whether the "set of uniform pools" model is the ideal model or the practical one. The point is that the two models are just different ways of describing the same thing.
What I described is the point of insurance from my perspective. If you want to take plain barter (or charity, or forced redistribution) and call it insurance, fine—but we'll still need a word to describe a contract which trades risk for equivalent pe
Re: (Score:2)
Nonsense. The demand for insurance is that it is easier to mitigate risk if you pay a small regular chunk of money you don't need in return for an occasional large chunk of money when you need it. The supply of insurance exists because entities are willing and able to pay more than the compound cost over a large set of entities.
Businesses like it because it simplifies their accounting and long-term planning. Not to mention that it frees up resources that don't have to be held in reserves. Individuals like it because an unlikely, but possible catastrophe doesn't mean that they're fucked financially until they die. Governments like it because people and businesses with insurance are able to take more risks, are less impacted by catastrophes and will be socially more stable.
There are universal benefits to people and businesses having insurance. To the point that it is cheaper to hand out insurance than deal with the after-effects of not having people and businesses insured.
Re: (Score:2)
Nonsense. The demand for insurance is that it is easier to mitigate risk if you pay a small regular chunk of money you don't need in return for an occasional large chunk of money when you need it. The supply of insurance exists because entities are willing and able to pay more than the compound cost over a large set of entities.
Businesses like it because it simplifies their accounting and long-term planning. Not to mention that it frees up resources that don't have to be held in reserves. Individuals like it because an unlikely, but possible catastrophe doesn't mean that they're fucked financially until they die.
Isn't that exactly what I said? Yes, I believe it was: "...the purpose of insurance, medical or otherwise, is for like-risk individuals to form a pool and trade assessed risk for equivalent, but predictable, premiums." In other words, to "mitigate risk."
There are universal benefits to people and businesses having insurance. To the point that it is cheaper to hand out insurance than deal with the after-effects of not having people and businesses insured.
Sure it's cheaper—when the costs are externalized onto all the people forced to pay for more insurance than they need or want, either directly or indirectly via taxes. Everything seems cheaper when you don't have to fund it yourself. That doesn't even
Re: (Score:3, Interesting)
No. What I said and what you said are fundamentally different. You assume like-risk, I don't. Furthermore, I don't assume that pools are formed by individuals. I merely assume that a demand exists, and that there is a product to fill that demand.
You also misunderstand the reason that insurance works. It works BECAUSE cost is externalized onto all the people who pay for more insurance than they need.
If people would pay for exactly the insurance they need, they could just as well pay a regular amount into a s
Re: (Score:2)
You assume like-risk, I don't. Furthermore, I don't assume that pools are formed by individuals. I merely assume that a demand exists, and that there is a product to fill that demand.
There is absolutely no significant difference between what you said and what I said in this area. Ignore the bit about "like-risk"; it's just distracting you from the big picture. It comes from the abstract model of insurance where each insurance contract is placed into a "pool" with many other contracts with similar risks and premiums. In practice, of course, insurees just pay premiums in proportion to their risk, and no one bothers to keep the actual reserves separate for different levels of risk. It work
Re: (Score:3, Insightful)
Knowledge is power. All in all, it's good that we are learning about ourselves. Ultimately it gives us more choices.
But power always cuts two ways. Insurance companies won't be able to resist the temptation to abuse this knowledge. Though they aren't qualified, they'll pass judgment on genes, deciding which ones are "bad" and "good". They'll take a lot of shades of gray and paint them black and white, and they won't get it right. Suppose they find something like a correlation between baldness and sk
Re: (Score:3, Insightful)
You can claim Godwin if you want, but the topic is so close to eugenics and eliminating the untermensch anyway, it's hard to avoid.
What do you propose that those people whose premiums woud be impossibly high (or who are insurance pariahs) should do? Euthanasia? (illegal anyway).
Re: (Score:2)
What do you propose that those people whose premiums woud [sic] be impossibly high (or who are insurance pariahs) should do?
If they truly cannot get insurance, then their only option is accept the risk themselves and hope they don't get sick or injured.
If they do anyway, and cannot afford health care even after exhausting all available options for charitable assistance, then they are in exactly the same position as one who has a disease or injury for which there is no known cure—a position which, needless to say, every person who has ever lived (or is currently alive) has faced (or will face) at some point.
Re:The Good, the Bad, the Ugly... (Score:4, Informative)
Unfortunately for the social Darwinists in the crowd, they DO have one last option available. That is, attack the society that told them to just kindly go away and die quietly somewhere and take what they need. It's not as if they would have anything to lose is it?
The same philosophy of social darwinism that tells you it's OK to just let them die also tells them it's OK to kill you so they and their family might live. The difference is that at some point they will face a 100% chance of death if they DON'T attack and a significant but lesser chance of death if they do.
Disenfranchise people en-mass long enough and soon enough they will form their own society. If the parent society interferes with that, they will eventually become an enemy.
Alternatively they become a diffuse source of discontent and the society unravels from the inside out.
Re: (Score:2)
I'm not a Social Darwinist. A Social Darwinist would argue that charity is wrong as well because it allows the weak to survive. (The label "Social Darwinist" is often used to demonize one's opponent, but you are unlikely to encounter one in practice. There are a few out there, though.)
Your argument is a good reason to donate to charity, but you appear to be taking it as a justification for theft. That is not something which you have any right to authorize. If you can persuade others to donate, great. If not
Re: (Score:2)
I am no more authorizing theft than you are infringing on the right of the majority to enter into a voluntary covenant called government to take care of these things for them.
I looked very carefully and deeply into the Libertarian philosophy a number of years ago. After a year I concluded that it ends in anarchy and bloodshed every time. It's inevitable because power attracts more power and money attracts more money. At some point that degrades into take it or leave it contracts where leave it means starve
Re: (Score:2, Insightful)
Re: (Score:2)
Ahh, that made me laugh. Thanks again AC. You always know just what to say.
Consent (Score:2, Interesting)
The doctors' permission?! (Score:2, Insightful)
Yeah, let's hope they got the doctors' permission, because, you know, it's not like the patients have a say in it or anything...
Don't you mean..... (Score:2)
I would think that getting the patients' permission would be a little more important.
Re:Don't you mean..... exactly (Score:2)
What on earth? The patients' doctors are irrelevant here, legally and ethically. It is patient consent that matters.
Re: (Score:2)
No, telling people what they can and cannot do and can and cannot say is what's important in California. If it drains their wallets in the process, then so much the better.
Quick, your state needs you! (Score:2)
California needs samples of saliva. If you live in California, proceed directly to the capital and spit on the front door. Your state is counting on you.
At least that way they can get saliva samples of conservatives. Of course, in California, that's a sample size of about four, but it's a start...
Re: (Score:2)
First, it's "to have", not "to of".
Second, are you implying that Schwarzenegger is a conservative?
I think those four conservatives in CA would disagree with you on that.
In fact, the wikipedia article you linked to has this to say:
s/Sequenced/Genotyped (Score:3, Informative)
With or without permission? (Score:3, Insightful)
The article seems to gloss over this BIG question.... Did they get the patients permission before they scan in their DNA and link it into their medical records?
If they didn't or aren't, then that is a big privacy violation with perhaps huge negative ramifications for those individuals (if any diseases are identified that aren't treatable but will impact their ability to get insurance).
Also breaks the doctor/patient trust entirely since your doctor is more or less stealing from you...
Re: (Score:3, Insightful)
Or for the patients children. I can see being in my later years and really not caring, since I'll presumably be on the federal dole (Medicare/Medicaid/Whatever) by then, but this data is also predictive of the patients children and grandchildren. Much as I can see the value in the research, this is a monstrous can of worms. Patient consent should be required at a minimum, and prohibitions on genetic discrimination are going to be required as well.
Re: (Score:2)
If they didn't or aren't, then that is a big privacy violation with perhaps huge negative ramifications for those individuals (if any diseases are identified that aren't treatable but will impact their ability to get insurance).
This depends entirely on the proper collection and use of the data. If they're looking for trends across a huge dataset, HIPAA rules allow them to de-personalize the data. Thus the sample comes from Male03241, whose identity is stored in a discrete location used only for specific purposes.
Thus, they'll know that someone has the gene for Parkinson's, but will not have access to who that person is outside their own study. And with a set of data this large, there's a solid chance they don't really need that
Re: (Score:3, Informative)
It would be completely illegal without informed consent. They would have had to go to their Internal Review Board (IRB) and get approval and would be required to follow federal guidelines. This is a highly regulated part of medical privacy and IRBs do not screw around with the rules because the institutional consequences are massive. They range from massive lawsuits to federal crimes. The scientists doing the SNP arrays would also be forbidden from knowing any patient information. Only the doctors involved
Diverse study? (Score:2)
The medical insurance company from Hell . . . (Score:2)
"Mr. elderly Californian, I'm afraid I have some bad news for you . . . you have cancer."
"But I also have some good new for you, it's treatable."
"But yet again I have some bad new for you: you have the QZURVN gene, which our research indicates that you will die of heart disease in a few years anyway, so why should we bother treating the cancer?"
Other countries (Score:2, Interesting)
Re: (Score:3, Informative)
a) Listen harder
b) They only tell your parents about it and by the time you are old enough to care chances are your parents have forgotten.
Re:Other countries (Score:4, Insightful)
You have universal healthcare in Sweden, so all the citizens should theoretically get equal/fair treatment anyway. People in America aren't generally afraid of having that "personal" information known, rather they worry about the possible consequences of private healthcare providers and employers accessing that data and discriminating.
Re: (Score:2)
In Sweden you aren't likely to die because someone else knew what your genetic codes were. In the US...well, it's illegal to discriminate because of a person's genetic variants, but it could be quite profitable if you're a health insurance company. Of course nobody worries about that because we all know that the health insurance companies are all ethical and law abiding.
So you aren't hearing any worries or complaints. You aren't. You aren't. You aren't hearing any worries or complaints.
Bad summary (Score:2, Informative)
Overheard in the doctor's office... (Score:3, Funny)
NO NO NO... not gene sequenced (Score:3, Informative)
This is not the same as sequencing their genomes. This will not provide a full sequence of each person's genome. It will look for specific mutations that have already been identified and tell us who has certain point mutations.
Think of it as the difference between having the full text of the file in the case of sequencing and having a count of the number of times the writer wrote "teh" instead of "the"
This is not to say that this study is without merit but it is not gene sequencing or genomic sequencing.
For more information on SNP arrays wikipedia is helpful [wikipedia.org] and if you really want details you can talk to Affymetrix [affymetrix.com] (I bet these are the arrays they will use).
Gattaca anyone? (Score:2)
As a former and future California resident (Score:2)
I can say without a doubt that Kaiser Permanente is hated...for many reasons. All of the worst things you've heard about managed care/hmos, etc crystalled in one company.
Re: (Score:2)
I can say without a doubt that Kaiser Permanente is hated...for many reasons. All of the worst things you've heard about managed care/hmos, etc crystalled in one company.
I bet the "public option" will look very much the same...a "public option" will, like Kaiser, insist you take the "blue pill" that costs half the price.
Re: (Score:2)
Family histroy more accurate (Score:2)
Why permission from the Doctors? (Score:2)
Why in the world would you think they should have permission from the patients doctor, and not from the patients themselves?
Re: (Score:3, Funny)
If you want to get SENS working right, you have to blow on the cartridge, but that's ridiculous. Who'd want to make SNES work when they could get the N-64 working and play Goldeneye instead?