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."
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%"
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 needed in some unconstitutional way, so I donno....
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 DNA on the fly to use as planted evidence...
Re:I'd do this in a second (Score:2, Insightful)
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
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 only way you can see that is as a violation of your privacy (and it's not yours, by the way, but the people who volunteered for the study), then you are severely lacking in imagination, scientific curiosity, or just another Luddite howling "wolf" at every mention of human genetics.
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?
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.
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.
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 !!!!
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.
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:3, Insightful)
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.
Re:I'd do this in a second (Score:3, Insightful)
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 such headaches that they need one each to get rid of their headaches. 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.
The further idea is that although there are inefficiencies and deficiencies with the market distribution method, the alternatives are worse.
Re:I'd do this in a second (Score:2, Insightful)
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, people who could pay for it stopped paying for it and the free system overloaded. After just SEVEN MONTHS in operation. 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.
It was the most amazing thing to hear Obama saying that he didn't want to eliminate existing insurance, just provide free coverage for those who can't afford it. He has no clue how many people would stop paying for their existing insurance and go with free, so his projections on cost and workability are skewed. It's the same as every other entitlement program ever enacted. FREE draws crowds of people who can afford it but don't want to pay. What's worse is that those who drop paid insurance for the free stuff are likely to be the ones who don't need much medical care to start with and object to paying insurance for something they don't need. That leaves all the sick people paying insurance because they can't change with an existing condition, which can't provide services because it is no longer getting subsidized by people who are paying but not needing services.
And then we can join Canada and have ten month waiting lists for OB services. (Here's the clue: OB's deliver babies. Babies take only nine months. If you have to wait ten months to see an OB, you will have a one month old baby to show him, delivered by yourself.)
Re:Just maybe... (Score:2, Insightful)
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 they faced.
d.
Re:I'd do this in a second (Score:5, Insightful)
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.
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.
When you're rich and tenured... (Score:3, Insightful)
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.
Re:I'd do this in a second (Score:3, Insightful)
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 (make the countrys life expectancy drop medical expenses rise)?
http://abcnews.go.com/2020/Story?id=3568278&page=2 [go.com]
http://www.despair.com/achievement.html [despair.com]
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.
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.