Scientists To Post Individuals' DNA Sequences To Web 219
isBandGeek() writes "With shocking disregard to their personal privacy, at least 10 people volunteered to release their entire medical records and DNA sequences in order to get their DNA decoded and analyzed. 'They include Steven Pinker, the prominent Harvard University psychologist and author, Esther Dyson, a trainee astronaut and Misha Angrist, an assistant professor at Duke University. They have each donated a piece of skin to the project at Harvard University and agreed to have the results posted on the internet. The three are among the first 10 volunteers in the Personal Genome Project, a study at Harvard University Medical School aimed at challenging the conventional wisdom that the secrets of our genes are best kept to ourselves. The goal of the project is to speed medical research by dispensing with the elaborate precautions traditionally taken to protect the privacy of human subjects."
time to clone them (Score:5, Funny)
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I'm sure that seeing the DNA of Steven Pinker, Esther Dyson and Misha Angrist is interesting to a select few, but if you REALLY want the crowd to gain interest you should get the DNA of the one-man-freakshow Michael Jackson. Or maybe that really hot chick from "Who Framed Roger Rabbit".
I'd do this in a second (Score:5, Insightful)
If this will really help the science move forward more quickly, then the benefits of everyone not knowing my DNA will easily be offset by the new scientific knowledge.
Re:I'd do this in a second (Score:4, Insightful)
Nobody can do more than glean a few random statistical probabilities from DNA as it stands now.
And yet in the swirling mists of half-truths and the unknown, people act the craziest.
I'm sure that the 8th volunteer (who has the marker for "10% risk of cancer") will be grateful after a decade of being uninsurable when the scientists go "oh wait, that should be 0.01%"
Re:I'd do this in a second (Score:5, Insightful)
If people are being denied medical care because they release information about their health the problem lies not with the person releasing their information, but with the society in which they live.
Re:I'd do this in a second (Score:5, Insightful)
Well, that will give them moral superiority as they declare bankrupcy following a life-saving emergency surgery.
"I may live in a box, but it's cause the system is broken, not my fault."
Re:I'd do this in a second (Score:5, Interesting)
Well, that will give them moral superiority as they declare bankrupcy following a life-saving emergency surgery.
Or: This will give them moral superiority after they wisely emigrate to Europe where (in at least most countries) they will not have to deal with an insurance company refusing them medical insurance. Instead it all gets covered by national health care, pre-existing condition or not.
Leaving medical coverage to private companies that has no obligation to provide insurance to people not meeting certain health standards is inhumane and evil. At least if your country has enough money to support a proper health system for everyone.
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The Genetic Information Nondiscrimination Act passed! Don't you people read the news?
loc.gov [loc.gov]
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I think the idea is that resources are scarce and so if high-risk people are denied coverage more people can be treated because resources can cover more if they're not being spent on people who require expensive treatment. So it's sort of a utilitarian argument. Say there are three people and two indivisble pills for headaches. One guy is incapacitated with such a headache that he needs the two pills to get rid of his headache, and two of the people are incapacitated in the same way as the first guy with
Re:I'd do this in a second (Score:5, Insightful)
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What claptrap you post, Anonymous Coward.
Universal medical care is in place in every industrialized country except the U.S., and no infinities have been encountered.
Re:I'd do this in a second (Score:4, Insightful)
The idea is that that you give the two pills to the guys who only need one pill each, because then you have two healthy people rather than one.
Cubans spend what, $35/year on average on medical care, yet have the same life expectancy and about the same infant mortality rate we do? Yet we can easily spend more than $35 on a single pill, even with prescription coverage...
I think it should be obvious to anyone that the system is the problem. In fact, resources are not scarce. All scarcity in a market based on artificial chemicals is itself artificial. It's like saying there's a shortage of Freon because we can't make it fast enough. No, it's just now illegal to make in the USA - but you can still sell it.
It's okay, children (Score:4, Insightful)
...it's okay to mark me troll when I threaten your assumptions. But I sure do wish you'd drop me a line in my journal and let me know who you are so I can foe you, so I never have to read your comments.
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Considering how much cheaper it is to prevent than to treat, the truly utilitarian thing to do would be to accurately map everyone's risks and tailor a prevention program just for them. From an utilitarian point of view, it is insane to give people
Re:I'd do this in a second (Score:4, Insightful)
Is that why I pay so much for healthcare? I pay more per month for health care than I probably use in a year... just in case. This is supposed to be a pooled resource so that people that are less fortunate health-wise can afford to get healthcare. There are hundreds of people like me, only a few like them. Of course insurance companies would like to weed out 'them' from their policies so they don't have to pay out but that's not because of scarce resources (nowhere in the world is there scarcity of any resource, only artificial scarcity by either societies, corporations or governments) it's because of pure greed and profit. Insurance companies should be not-for-profit organizations, only making enough money to cover their expenses and a pool of money that's invested in something with steady returns for pay outs. The fact that insurance companies are listed in stock markets is bad enough.
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That's the very real problem of the American Health Care System.
Ok I get the principle "why should I pay for other peoples health care"
But your getting instead a system
Priced at a point to maximise profits, and denies the people who need it most.
Surely the only people who gain are the very rich.
It's not just Health Care which is showing this flaw.
Energy Companies are now working on the same principle, price at what you can get not at what it costs, House prices have no relation to cost it's again sell for
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I bet you can sign up for SMS alerts for any updates about what your DNA means to you. That's certainly worth .002 cents.
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Because insurance companies totally run checks to see if you happen to be one of the ten people on the planet whose DNA is publicly available and then analyze it.
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Even if reams of accurate information could be decoded right now, I don't see how this could be considered an "invasion of privacy" when the individuals signing up for it are willingly giving permission for all this info to be posted about them. And as TFA states (yeah, I know, I wasn't supposed to read it before commenting), the first 10 were specifically chosen to be people who understood the ramifications of having this info posted.
Re: Forfeit of Privacy, not invasion (Score:2)
Yes, it's knowing, so it's not an invasion. It's a forfeit, perhaps a sacrifice. Now we get to see if the sacrifice is unsound.
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They aren't just posting some parts of their DNA, they're also posting their full medical records. At the moment, that's a bigger loss of privacy.
They are healthy people, so they aren't at a big risk: but it might be that they'll eventually be recognized as carriers of some genetic problem, in which case their relatives may have trouble getting health insurance.
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The US still has a lot of people who think UHC is a communist plot that will "ruin the economy" and "degrade the quality of care". Those people should really take a good look at the rest of the western world where the health systems have progressed well past the 1950's leaving US citizens paying for the most expensive system in the world that arguably produces the worst outcomes in the weste
Re:I'd do this in a second (Score:5, Informative)
It's not just about the medical aspect of it, you know. It's amazing what you can do with someone's information when they're freely giving it to you.
In a legal setting, you'd be surprised at the lengths that law enforcement agencies go through to collect DNA samples from individuals who may not want to cooperate with them. The old "Would you like some coffee, soda, smoke" bit comes to mind when you want to collect DNA from a suspect.
Something like this stunt, while great from a PR perspective, just simply makes it possible for insurance companies to deny them coverage in the future, allows law enforcement agencies to add their genetic profiles to their databases, etc, and they can't argue against it with the 'invasion of privacy' line. They volunteered it themselves.
Re:I'd do this in a second (Score:5, Insightful)
Worst-case scenario, they can move to a country that actually cares about its citizens and provides decent free health care. And if they're not planning to commit a crime then they probably don't care about being on a DNA database.
Let's get over the paranoia, people ... the amount of data your average kid puts on Facebook is enough to impersonate them.
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Where's my mod points when I need to mark a troll?
A country that cares about its citizens doesn't try to take over the health care industry, it allows people to get the amount or level of insurance they want and don't overload the system by making it free for all. Free for all means mediocre or poor for everyone.
Hawaii has just dropped free health care for children because, duh, p
Re:I'd do this in a second (Score:4, Insightful)
You're right, the system we have now, where people go bankrupt trying to save their lives or the lives of a loved one is *so* much better.
What's funny and sad at the same time is we'll bankrupt the nation to support a war and help out big business... but providing health services would somehow be a big no no.
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A country that cares about its citizens doesn't try to take over the health care industry, it allows people to get the amount or level of insurance they want and don't overload the system by making it free for all. Free for all means mediocre or poor for everyone.
That's a bunch of crap, and here's why: If you have the money, you can still pay for care in cash if you want to. No one will stop you.
There is no reason why we should pay orders of magnitude more (even with "health insurance") for health care than people in other countries with the same life expectancy... for example, Cuba.
Hawaii has just dropped free health care for children because, duh, people who could pay for it stopped paying for it and the free system overloaded.
If the source of funding for Hawaii's health care system was flawed, it still doesn't mean the idea of national health is flawed. Nice try, though.
Funny how people who demand free health care for all can't predict that those who pay for it now will STOP and there will be no "free" for anyone.
Actually, no one has suggested that it
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That's a bunch of crap, and here's why: If you have the money, you can still pay for care in cash if you want to. No one will stop you.
There is no reason why we should pay orders of magnitude more (even with "health insurance") for health care than people in other countries with the same life expectancy... for example, Cuba.
Well I guess the problem is that many people don't have the money if they have to pony up an extra 5-10% in taxes for universal health care.
And with regards to Cuba. Are you willing to forcibly reduce the doctors wages to $20 per month and physically prevent them from seeking abroad to earn more? Or in other words: Are you willing to turn USA into a giant prison camp to get cheap health care?
Are you also willing to implement a system of forced abortions to prevent the weak and sick from entering the world (
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Are you willing to turn USA into a giant prison camp to get cheap health care?
I guess you didn't notice, but the USA is already a giant prison camp. We have a no-fly list, lots of people are being denied passports for bullshit reasons (I have a friend who has a paper from the court saying that the child support claim filed against him was bogus, but who still can't get his passport because of it) and arrests for victimless crimes are up considerably in the last couple of years, especially among those desirable for military service. (Military servicewomen are being murdered and the ev
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A woman who joins the Air Force has over a 99% chance of being raped by a fellow member of the service sometime during their career.
Do you have a source for that rather surprising fact?
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And with regards to Cuba. Are you willing to forcibly reduce the doctors wages to $20 per month and physically prevent them from seeking abroad to earn more?
Does it means that those "3432 medical students from 23 nations" [wikipedia.org] studying in their "first-class" medical schools are forced to work within the country?
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If the system gets overloaded by "free for all", then that means that the system was never sufficient to treat everyone. This is understandable if the system was based on private industry previously, as such a system is naturally sized to only tre
Re:I'd do this in a second (Score:4, Insightful)
"A country that cares about its citizens doesn't try to take over the health care industry, it allows people to get the amount or level of insurance they want and don't overload the system by making it free for all. Free for all means mediocre or poor for everyone."
Could you please provide some evidence for this statement? Free healthcare is provided in almost the entire Europe and Canada.
Yes, sometimes we have waiting lists for non life threatening operations. People sometimes rightfully complain about things and many things could be improved.
However, not once have I heard anyone seriously suggesting we get rid of nationalised health care. Why? Because health care is generally good, we all know we will be cared for regardless of our current financial status and because nationalised health care saves lives.
Contrary to what you might think, Doctors in the UK (and Norway) tend to like the nationalised health care, despite the fact that they could earn loads more in a privatised system. Why? Because they feel it is morally right and because they know they will never have to turn someone away simply because they don't have money or insurance.
This fantasy world many americans live in with regards to 'socialised medicine' is baffling at times.
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Free for all means mediocre or poor for everyone.
That means: medical care in all other developed western countries is a poor quality one? Please, tell me your are kidding [photius.com] :-)
I guess the main point here is: some cultures sees the capitalism as a "way to achieve things" and other cultures sees it as a "life style".
UHC is seen as a "must have" for the first group, because health is not a "thing". It is a right for every human being. And UHC is evil for the second group, as health is included in the "things" list.
Re: G. I. N. A. (Score:2)
You lose.
Wait till they find a hot gene that predisposes towards something rough.
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"Something like this stunt, while great from a PR perspective, just simply makes it possible for insurance companies to deny them coverage in the future..."
Insurance companies have better things to do than to mess around with the premiums of test subjects by trying to guess that a 1 instead of a 0 in the 18238940th bit of a subject's DNA sequence means they statistically have a 50% greater chance of getting a disease that will kill them five years sooner.
Anyway, what you're talking about is illegal in the U
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Nobody can do more than glean a few random statistical probabilities from DNA as it stands now.
I was thinking more being able to clone them in 20-40 years or release a disease tailored to their DNA code inside of 50 years. That's assuming the current rate of progress.
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I was thinking more about their relatives.
Those 10 people aren't the only ones who have those bits of DNA.
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>>Shocking disregard for personal privacy?
Yeah, I mean, didn't the same summary say that they volunteered to release it?
My guess is that they'll conclusively find that the astronaut had DNA which ensured she'd be an astronaut. It's amazing how powerful your results are when you have a sample size of 1.
Nonsense (Score:2)
There is still a great deal to learn, surely. Including how much of our individual physical makeup is not strictly determined simply by DNA sequences. But... since the advent of the PCR and other tools, the research and knowledge have ad
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It'll be half a century before we're able to tell enough about a person that it could be considered an invasion of privacy.
So what you're saying is that it's their children and grandchildren that will be refused medical insurance thanks to this "selfless" act.
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Just maybe... (Score:5, Interesting)
Or, just possibly, they are rational individuals who lack the privacy fetish and extremism so common on Slashdot.
Re:Just maybe... (Score:5, Funny)
Or, just possibly, they are rational individuals who lack the privacy fetish and extremism so common on Slashdot.
Quick Slashies! An imposter! Grab your flaming brands and pitchforks! We have an angry mob to form!
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I prefer to use killer robot armies, but pitchforks, flaming brands, works for me.
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Re:Just maybe... (Score:5, Funny)
Sure, right now it might be fine to be descended from apes, but who knows who'll take office in 10 years! Maybe Tom Cruise and then where will you monkey-derived, xenuphobic people be? Guantanamo Bay. That's right.
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Or, just possibly, they are rational individuals who lack the privacy fetish and extremism so common on Slashdot.
Fetish eh?
Call me a fetishist when health insurance companies aren't rubbing their hands waiting to use such data to bump up premiums or refuse claims. Or perhaps when law enforcement understands that with over 6.7 billion people on the planet a 1 in 1 million chance of DNA data being incorrectly administered isn't good enough - that could put over 6700 people in jail. Or wake me when we've compl
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Does your tinfoil hat chafe much?
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Does your tinfoil hat chafe much?
It's not a question of paranoia. It's a question of what makes sense, and what's true historically.
From the point of view of the organisations...
It makes sense for insurers to try to deny claims whenever they can, and they've done so in the past.
It makes sense for governments to want increased control over its citizenry, and historically control almost always increases, especially with technology enabling it.
It makes sense that law enforcement tends to make mistakes because
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Get out of my teeth!
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Or, just possibly, they are rational individuals who lack the privacy fetish and extremism so common on Slashdot.
Isn't that what was said about MySpace and Facebook before people started getting fired?
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Isn't that what was said about MySpace and Facebook before people started getting fired?
For blogging about what an asshole their boss is, typically. Or for posting pics of yourself involved in questionable activities. [independent.co.uk] Yes, that will get you fired. One has a harder time claiming "privacy violation" when you willing post incriminating information about yourself to a public forum. Honestly, I'd call that a lack of judgment [lifehack.org] rather than a lack of privacy.
I'd call the current blog/MySpace craze a different fetish: A desire to share the most intimate details of your life with the entire world.
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I agree with parent poster that surely one's own privacy is something one can decide for oneself to flout.
But: one shares 50% of ones DNA with siblings, parents, and children, making such a decision forcibly reveal their DNA as well. Perhaps Pinker et al. did consult their closest relatives, but as a general principle I think that individual DNA should never be publicly available.
When population genomics company DeCode wanted to create a large research database of Icelandic DNA, this was one of the problems
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Or, just possibly, they are rational individuals who lack the privacy fetish and extremism so common on Slashdot.
There are two things to consider here. First, being one of a small number of people to volunteer such information may be highly advantageous. That is, the harm from releasing such information may be more than countered by being readily accessible to researchers. Ie, because your data is there, genetic diseases that manifest in your genes are more likely to get treated than diseases without such an accessible genetic record.
But it's irrational to assume the same would hold, if you are one of several billion
Announcing DNAHarmony.com (Score:5, Funny)
With our easy DNA submission process, we'll find you the most genetically compatible partners on Earth. Isn't it time you gave up a little privacy for a chance at optimal mating?
Re:Announcing DNAHarmony.com (Score:4, Interesting)
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Re:Announcing DNAHarmony.com (Score:5, Interesting)
Not good odds, that.
(I realize that I may have treated that comment more seriously than it was intended)
Re:Announcing DNAHarmony.com (Score:5, Funny)
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"With our easy DNA submission process, we'll find you the most genetically compatible partners on Earth. Isn't it time you gave up a little privacy for a chance at optimal mating?"
No problem with a sample. I'll just send in my keyboard and they can pour out as much as they like.
Coming from someone who cares about security (Score:2, Insightful)
That being said though, I'm sure the government(s) would find ways to force this information out of them if neede
Re:Coming from someone who cares about security (Score:5, Insightful)
This is not necessarily true. The UK DNA database allows the police to make educated guesses about the last name of the originator of a DNA sample, as your father often will have the surname name as you. Is it a stretch that with a possible name, race, and good probabilities of the contents of their medical records, it only takes a small push to get laws passed making this information part of the Government-accessible domain?
What doesn't happen to 10 will happen to 10M. (Score:2, Insightful)
The threat of publicly-available genetic profiles is that insurers will use them to increase premiums or deny coverage to people with markers for certain diseases or vulnerabilities.
If only ten people's DNA information is available, that will not make a difference in the bottom line. Ten thousand people is worth study. Ten million people, now we're talking serious bottom-line savings by eliminating all that sickly deadwood!
And that's before getting into the possibility of cooking up some random person's D
"Shocking disregard..."? (Score:2)
There is nothing unethical in this, but it does cause some problems. These people are not participating in a study, and therefore have not given Informed Consent. Instead, they have made their own decision to publish these details about themselves.
The problem is that this could lower the bar for expectations in formal medical studies in the future. It opens the door for study protocols that contain eroded protections for human research participants. It becomes more important than ever that the Independent R
Volunteer (Score:2)
Volunteered, volunteered, volunteered... Why does the summary insists on this ? For all I know many people would pay a lot of money for that.
genetic exhibitionists (Score:4, Insightful)
exhibitionists are those who flaunt in public happily that which conventional wisdom has decided should be kept private. usually not for a better intellectual or moral reason, mainly just because of ego. mostly harmless
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I really don't think we can claim "conventional wisdom" in this area yet - it's really only starting to become something relevant to people's lives. With constantly lowering costs, the explosion in the amount of p
Summary totally misses the point (Score:2, Insightful)
Actually, what's going on is that with the aid of new sequencing technologies and LOTS of bitchin' huge computers, we're entering an age where we can take on sequencing multiple individuals with the goal of furthering scientific exploration and medical knowledge.
If the
Personal Genome Project (Score:2, Funny)
But, seriously, I doubt that there's anything useful that a non-research-geneticist could do with the data, even if it was public.
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But, seriously, I doubt that there's anything useful that a non-research-geneticist could do with the data, even if it was public.
Well, we won't know unless we try, right?
Plus as Linus once said, real men upload their stuff to FTP and let the world mirror it, so having your own DNA copied all around the world is bound to be the pinnacle of manliness.
Notihng New (Score:2)
People have always been able to determine someones sex by looking into their jeans.
Oh wait...
Can I release mine under GPL? (Score:2, Interesting)
That way any derivative work and source code also has to be made available under terms of the GPL. Right?
Might even be useful in stoping stupid patents on subroutines and functions contained within the set. It works for software in that way, why not DNA code?
BSD is better (Score:4, Funny)
Face Recognition? (Score:2)
Does this get added to that database discussed earler? Oh, and along with the tracking of your daily activities ?
Sylar sez (Score:2, Funny)
Let's go make a list, Mohinder!
strangely (Score:3, Insightful)
I am not at all shocked - I am sure I have left genetic material over more than one continent - if someone wanted to sequence my DNA and post it on the Internet - HAVE FUN !!!!
Masturbation Gene (Score:5, Funny)
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Please, please, please... (Score:2)
Privacy is personal (Score:2, Insightful)
Whatever (Score:5, Insightful)
Subby: Don't do that! You're violating your own privacy!
Volunteer: I'm doing this for the benefit of science.
Subby: Yes, but then...people can look up your DNA and medical records!
Volunteer: Uh. That's the point.
Subby: But people can see them!
Volunteer: Yes. I understand that. I am. Voluntarily. Releasing. My. Own. Records.
Subby: But bad stuff could happen!
Volunteer: Probably not. But I'm okay if it does. The overall benefits outweigh the personal risk.
Subby: But that's....bad!
Volunteer: Why?
Subby puts on tin-foil hat.
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As if he's had it off in the last 10 years.
DNA Sequences will not be patentable now (Score:3)
Since the DNA sequences are being published, they now can be used as prior art in patent busting. No more patents on human genes!
Good goal (Score:2)
aimed at challenging the conventional wisdom that the secrets of our genes are best kept to ourselves.
That conventional wisdom REALLY needed to be challenged. Next CW up for challenge: the idea that you shouldn't give strangers your ATM card and PIN number.
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Next CW up for challenge: the idea that you shouldn't give strangers your ATM card and PIN number.
Too late. The 'Check Card' that has become almost ubiquitous is an ATM card that has no PIN number so is always known as nothing. So, the banks have already handed out the PIN number to strangers.
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Your bank is pants.
My bank is pants too, but my check card has a pin, I cannot withdraw cash without it, and I'm not liable for any fraud cause by a non-PIN transaction (ie, one over the VISA network)
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Replay? (Score:3, Interesting)
If you look on the Human Genome Browser right now (http://genome.ucsc.edu/), those from people who volunteered to have their genomes posted online. I'm pretty sure Dog is from one of the first guys Labrador Retriever if I recall.
Employment woes? Maybe not....... (Score:5, Funny)
Personnel Flunkie #1: "Fuck Dave, your still going through the DNA filters on the new applicants? Whats tak...BITCH!...ing you so long?"
Personnel Flunkie #2: "Get bent. Every single one of these mutants has somet...KAKA!...hing wrong with them. This guy has alcoholism markers, this sick fuck has a predisposition to pedophilia......Wait! This guy just has Tourette's. He'll fit right in."
Is this THE Esther Dyson? (Score:2)
If it is, and I assume that is the case, referring to Esther Dyson as a trainee astronaut is a rather laughable description of her career and importance.
Just think (Score:2)
Excellent! (Score:2)
O.S.M. (Score:2)
Wow! Shocking Disregard!!! (Score:2)
When you're rich and tenured... (Score:3, Insightful)