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100,000 Californians To Be Gene Sequenced
Posted by
Soulskill
on Wed Oct 21, 2009 11:33 AM
from the homing-in-on-the-prius-gene dept.
from the homing-in-on-the-prius-gene dept.
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."
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California Cracks Down On Genetic Testing 165 comments
genie-out-of-the-bottle writes "California's Department of Public Health has sent cease-and-desist notices to 13 companies that market genetic testing directly to consumers. (We discussed these services when they launched.) Allegedly, under state law, California residents must submit a doctor's order to have a genetic test run. It will be interesting to see if the government will actually succeed in putting the genetic genie back in the bottle, given that all you need for testing is a few drops of saliva. The effort closely resembles US government attempts to block export of strong encryption product back in '90s." A Wired editor has up an opinion piece arguing that his DNA is his business and none of the government's.
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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."
Parent
Re:Damned sure glad... (Score:5, Informative)
This is why we passed GINA: http://www.genome.gov/24519851 [genome.gov]
Parent
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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.
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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.
Parent
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.
Parent
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.
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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)
Parent
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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.
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http://www.genome.gov/24519851 [genome.gov]
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And no company would ever break a law to increase it's profits.
Re:The Good, the Bad, the Ugly... (Score:4, Insightful)
Parent
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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: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?
Parent
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
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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: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.
Parent
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.
Parent
Re: (Score:3, Insightful)
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.
Parent
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
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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
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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
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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: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.
Parent
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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.
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...
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...
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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.
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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
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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)
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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.
Parent
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).
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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?