Scientists To Post Individuals' DNA Sequences To Web

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."

Comments

time to clone them

[yincrash]

that'll show 'em!

I'd do this in a second

[moderatorrater]

Shocking disregard for personal privacy? Nobody can do more than glean a few random statistical probabilities from DNA as it stands now. It may be that in ten years we'll know more, but if our knowledge of DNA goes at the same pace that it did for the last ten years, 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.

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

[Anonymous Coward]

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

[djmurdoch]

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.

Re:I'd do this in a second

[Swift Kick]

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

[Anonymous Coward]

Exactly; just wait until one of them shows up as having the BRCA gene. They'll never be able to switch insurance again. Leave one job and move to another with different medical - nope.

Re:I'd do this in a second

[Xaria]

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

[mollymoo]

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%"

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

[philspear]

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

[khallow]

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

[bws111]

The Genetic Information Nondiscrimination Act makes that illegal.

Re:I'd do this in a second

[a whoabot]

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

[Obfuscant]

Worst-case scenario, they can move to a country that actually cares about its citizens and provides decent free health care.

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:I'd do this in a second

[mollymoo]

The scarcity business doesn't apply, every Western economy can afford universal medical care.

Re:I'd do this in a second

[aztektum]

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

[drinkypoo]

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.

Re:I'd do this in a second

[ultranova]

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.

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 incentive to avoid knowing their risks.

But of course the medical industry's purpose isn't to keep people alive or healthy. It is a private business, and like all private businesses, it too exists to make a profit to its owner. Any benefit to anyone else is merely a side effect. That leads to this kind of insanity, but is kept this way anyway because of ideological reasons.

Re:I'd do this in a second

[ultranova]

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.

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 treat the rich, since only that is profitable; however, the countries which have universal healthcare will simply pour more resources into it, expanding it until it is scaled up sufficiently.

Of course that annoys people who think they're John Galt, but, since they really aren't, that's fine.

Re:I'd do this in a second

[jlar]

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

http://www.despair.com/achievement.html

Re:I'd do this in a second

[GauteL]

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.

Re:I'd do this in a second

[GauteL]

"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

[guruevi]

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.

Re:I'd do this in a second

[partenon]

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 :-)

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:I'd do this in a second

[partenon]

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" studying in their "first-class" medical schools are forced to work within the country?

Re:I'd do this in a second

[Lord Ender]

The Genetic Information Nondiscrimination Act passed! Don't you people read the news?

loc.gov

Just maybe...

[DerekLyons]

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.

Or, just possibly, they are rational individuals who lack the privacy fetish and extremism so common on Slashdot.

Re:Just maybe...

[Fluffeh]

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.

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!

Re:Just maybe...

[lymond01]

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.

Re:Just maybe...

[dhelgason]

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.

Announcing DNAHarmony.com

[Anonymous Coward]

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

[Miststlkr]

Our computers will individually combine your DNA codes and display an potential image of your offspring alongside each individual's profile image. For a small fee, you can also sign up for our DNAHarmony Pro package which allows you to select the most desired traits in your offspring and we will find you potential mates who have the best percentage chance of meeting your desired goals.

Re:Announcing DNAHarmony.com

[uberjack]

(disclaimer: DNAHarmony cannot be held responsible for the almost-certain birth defects that are likely to accompany our matches, should they choose to procreate)

Re:Announcing DNAHarmony.com

[glwtta]

Mating with yourself, dubious mechanics of it aside, is virtually certain to produce non-viable offspring. If memory serves, duplicating any chromosome (ie throwing out one half of the pair and duplicating the other) has about a 1 in 3 chance of uncovering a recessive lethal allele. And you have a 50% chance, for each of the 22 autosomes, of getting such a duplication if your parental genomes are identical.

Not good odds, that.

(I realize that I may have treated that comment more seriously than it was intended)

Coming from someone who cares about security

[BorgAssimilator]

As long as they didn't put information about the person who the DNA came from up on the internet (name, contact information, etc), and didn't give that information out to anyone, I don't see a problem with it. (TFA didn't have any details about this) Without said information, all that anyone would be able to tell when they match the DNA is that "Oh, this person volunteered for this experiment."

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....

Re:Coming from someone who cares about security

[dex22]

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.

[Anonymous Coward]

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...

genetic exhibitionists

[circletimessquare]

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

[confusednoise]

This is a Your Rights Online issue? I'm not going to argue that there are no privacy issues with personal genetics (there obviously are), but framing this article in this way *totally* misses the point of the Personal Genome Project.

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.

Personal Genome Project

[PearsSoap]

Apparently, PGP != Pretty Good Privacy.

But, seriously, I doubt that there's anything useful that a non-research-geneticist could do with the data, even if it was public.

Can I release mine under GPL?

[Anonymous Coward]

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?

Sylar sez

[dedazo]

Let's go make a list, Mohinder!

strangely

[Dolphinzilla]

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

[Sperbels]

Let's see how cavalier they are about this when we find the gene that tells us how often one masturbates.

Privacy is personal

[ark1]

What is private for someone may not necessarily be for someone else. As long as they were the one making the decision while hopefully knowing the consequences, there is nothing wrong.

Whatever

[guyminuslife]

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.

BSD is better

[EmbeddedJanitor]

That way if you share your DNA with someone they don't have to tell the world about it and you won't get ratted out to your wife.

DNA Sequences will not be patentable now

[schwep]

Since the DNA sequences are being published, they now can be used as prior art in patent busting. No more patents on human genes!

Replay?

[nog_lorp]

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.......

[Anachragnome]

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."

When you're rich and tenured...

[dstates]

It is one thing to release your genome sequence when you are wealthy and have tenure at Harvard. It is quite another thing to do this an ordinary citizen who might want to change jobs and is not in a position to personally endow their child's health care. At the moment medical genetics is much better at diagnosing conditions than it is at offering cures for those conditions. We are making progress in guaranteeing rights against discrimination on the basis of genetics, but we have a long way to go.

It's okay, children

[drinkypoo]

...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.