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Scientists To Post Individuals' DNA Sequences To Web

ScuttleMonkey posted more than 5 years ago | from the time-to-fire-up-the-cloning-beds dept.

Privacy 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."

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219 comments

time to clone them (4, Funny)

yincrash (854885) | more than 5 years ago | (#25447167)

that'll show 'em!

Insurance threat is real. (1)

twitter (104583) | more than 5 years ago | (#25447853)

It won't be very funny to people who are denied insurance coverage for "bad" genes.

Insurance needs to be regulated again to avoid problems like that and many others. It's supposed to spread risk out through the population. Instead, insurance companies aim to make a buck on every individual and dump people with real problems. They also bully hospitals into favorable pricing in a way that medicine for poor people even less affordable. As a society we are not looking after our neighbors in this most basic of ways. The cost is needles expense, suffering and death. If you are into making money, you can justify this for yourself. If you are into providing healthcare, you can pull your hair as roughly 1/3 of all healthcare dollars go to insurance companies and patients are turned away.

Re:Insurance threat is real. (-1, Offtopic)

Anonymous Coward | more than 5 years ago | (#25447937)

don't worry twitter, you can blame all this on M$ and then your 14 closest friends [slashdot.org] can join in and agree with you.

I'd do this in a second (5, Insightful)

moderatorrater (1095745) | more than 5 years ago | (#25447169)

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 (4, Insightful)

Anonymous Coward | more than 5 years ago | (#25447191)

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 (5, Insightful)

mollymoo (202721) | more than 5 years ago | (#25447375)

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 (4, Insightful)

philspear (1142299) | more than 5 years ago | (#25447561)

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 (2, Insightful)

a whoabot (706122) | more than 5 years ago | (#25447701)

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 (4, Insightful)

mollymoo (202721) | more than 5 years ago | (#25447817)

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

Re:I'd do this in a second (0)

Anonymous Coward | more than 5 years ago | (#25448047)

Yes. The set of doctors is infinite. And all the resources doctors consume in order to live. The same for all researchers and all resources used for research. Sure, no scarcity.

Don't do that. You have other choices. (1)

Erris (531066) | more than 5 years ago | (#25447933)

An ethical society makes enough medicine for everyone and you can do that with well regulated insurance. No one wants to leave your third patient who needs two pills incapacitated, or dead. Highway robbery is an efficient living but we don't let people do it. The value of a person's existence is always worth more than few pills, so it is always right to buy the medicine. People can cooperate to make the money available without limiting anyone's freedom to do anything but rob their neighbors.

You already posted in this article. (-1, Offtopic)

Anonymous Coward | more than 5 years ago | (#25448071)

How about limiting [slashdot.org] yourself to a single account, like everyone else on Slashdot?

Re:I'd do this in a second (2, Informative)

bws111 (1216812) | more than 5 years ago | (#25447675)

The Genetic Information Nondiscrimination Act [genome.gov] makes that illegal.

Re:I'd do this in a second (1)

Iamthecheese (1264298) | more than 5 years ago | (#25447799)

illegal in America, you insensitive clod!

Re:I'd do this in a second (1)

sexconker (1179573) | more than 5 years ago | (#25447779)

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.

Re:I'd do this in a second (1)

davmoo (63521) | more than 5 years ago | (#25447213)

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 (1)

TaoPhoenix (980487) | more than 5 years ago | (#25447919)

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.

Re:I'd do this in a second (2, Interesting)

djmurdoch (306849) | more than 5 years ago | (#25447225)

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 (2, Insightful)

Anonymous Coward | more than 5 years ago | (#25447307)

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 (1)

Seoulstriker (748895) | more than 5 years ago | (#25447381)

Yeah, I would hate to have the BRCA gene, especially considering that all humans have at least one copy of it in their genomes. Me, I would prefer to have the BRCA genes, preferably with no deleterious mutations.

Re:I'd do this in a second (4, Informative)

Swift Kick (240510) | more than 5 years ago | (#25447271)

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 (4, Insightful)

Xaria (630117) | more than 5 years ago | (#25447361)

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 (0, Troll)

Dishevel (1105119) | more than 5 years ago | (#25447531)

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

Another one of those people who believe that because someone is born it obviously follows that the rest of us owe them.

Re:I'd do this in a second (2, Insightful)

Obfuscant (592200) | more than 5 years ago | (#25447707)

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 (1)

bws111 (1216812) | more than 5 years ago | (#25447723)

Or stay in the US where it is already illegal for employers and insurers to discriminate based on genetic information. Genetic Information Nondiscrimination Act [genome.gov]

Re: G. I. N. A. (1)

TaoPhoenix (980487) | more than 5 years ago | (#25447925)

You lose.

Wait till they find a hot gene that predisposes towards something rough.

Re:I'd do this in a second (1)

maxume (22995) | more than 5 years ago | (#25447835)

Yes, global immigration policies are oh-so-liberal.

Also, I'm pretty sure that 'universal' is a lot closer to the truth than 'free'.

Re:I'd do this in a second (1)

rm999 (775449) | more than 5 years ago | (#25448213)

"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 USA, even if the insurance companies wanted to go through the trouble:
http://en.wikipedia.org/wiki/Genetic_Information_Nondiscrimination_Act [wikipedia.org]

Re:I'd do this in a second (0)

Anonymous Coward | more than 5 years ago | (#25447631)

Shocking disregard for personal privacy?

Absolutely! They didn't even copyright their genetic code before releasing it. Now they'll never see a dime in royalties on copies, not to mention the residuals lost from derivative works...

Re:I'd do this in a second (2, Insightful)

khallow (566160) | more than 5 years ago | (#25447667)

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 (1)

fartmasterB (664800) | more than 5 years ago | (#25448185)

But in 50 years people will be able to look back at Steven Pinker's genome and determine exactly how large his penis was, which could be embarrassing.

Re:I'd do this in a second (1)

ShakaUVM (157947) | more than 5 years ago | (#25448271)

>>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.

Just maybe... (5, Interesting)

DerekLyons (302214) | more than 5 years ago | (#25447203)

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... (5, Funny)

Fluffeh (1273756) | more than 5 years ago | (#25447233)

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... (1)

sortius_nod (1080919) | more than 5 years ago | (#25447655)

I prefer to use killer robot armies, but pitchforks, flaming brands, works for me.

Re:Just maybe... (1)

Ethanol-fueled (1125189) | more than 5 years ago | (#25447729)

Agreed, without robot armies we'd have to leave our parents' basement to use pitchforks and flaming torches.

Re:Just maybe... (4, Funny)

lymond01 (314120) | more than 5 years ago | (#25447263)

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... (0)

Anonymous Coward | more than 5 years ago | (#25447309)

Or maybe because they haven't thought of the implications such as being diagnosed for 50 possible genetic diseases in the future and their insurance rates going through the roof...

Re:Just maybe... (1)

dedazo (737510) | more than 5 years ago | (#25447469)

Everyone is looking forward to the day we can lick the gloved finger of a TSA goon to figure whether or not we're allowed on the 3:15 to Chicago.

Re:Just maybe... (1)

syousef (465911) | more than 5 years ago | (#25447473)

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 completely eliminated any threat of a government deciding who can and can't breed based on what's in their genes.

I have a "fetish" for privacy just as I have a fetish for air and water. I need to secure these things to guarantee my survival.

Re:Just maybe... (1)

DerekLyons (302214) | more than 5 years ago | (#25447671)

Does your tinfoil hat chafe much?

Re:Just maybe... (1)

syousef (465911) | more than 5 years ago | (#25447773)

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 they're tasked with a lot and usually under-resourced. Corruption also historically does occur despite best efforts - it's human nature.

It's easy to dismiss someone as a nutjob and make offhand stereotypical comments about tinfoil hats. It's a lot harder to make a reasonable, sensible rational argument that requires neither paranoid dillusion or blind faith in a set of systems that have been shown to be flawed.

Re:Just maybe... (1)

maxume (22995) | more than 5 years ago | (#25447971)

Why not just argue that private insurance based on complete information isn't something that you think will work for society?

Re:Just maybe... (1)

Aurisor (932566) | more than 5 years ago | (#25447541)

Get out of my teeth!

Re:Just maybe... (1)

Qzukk (229616) | more than 5 years ago | (#25447699)

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?

Re:Just maybe... (1)

Dutch Gun (899105) | more than 5 years ago | (#25448025)

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. Pretty much the opposite of a privacy fetish, if you ask me.

Is a DNA sequence/medical record in the same realm as this? Maybe, maybe not. I don't think I would have volunteered.

Re:Just maybe... (2, Insightful)

dhelgason (178402) | more than 5 years ago | (#25447795)

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:Just maybe... (1)

khallow (566160) | more than 5 years ago | (#25447887)

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 people. You would no longer get preferential treatment and your genetic records would make you a target for all sorts of chicanry and exploitation. The obvious places this matters is health insurance and advertising. At the least, ethnicity and many medical conditions woule be revealed. Further, with a large group of people, it becomes worthwhile to datamine that DNA data for profitable things to exploit. Ten people just isn't worth the effort, but five billion people most certainly will be worth the effort and I wager someone with ruthless intentions will find some way to abuse this data in a terrible way.

And that's a big part of the problem. We know that DNA is in itself just about everything you need to make a human with similar characteristics. Who knows what information is encoded about us, our personalities, the way we think or act, etc? Just giving everyone this information without any understanding of the consequences is not rational.

Announcing DNAHarmony.com (5, Funny)

Anonymous Coward | more than 5 years ago | (#25447205)

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 (1)

DeadManCoding (961283) | more than 5 years ago | (#25447227)

Now this is funny! Somebody give this person a +1!

Re:Announcing DNAHarmony.com (1, Funny)

Anonymous Coward | more than 5 years ago | (#25447267)

Now this is funny! Somebody give this person a +1!

But, not this person.

Re:Announcing DNAHarmony.com (4, Interesting)

Miststlkr (593325) | more than 5 years ago | (#25447317)

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 (5, Funny)

uberjack (1311219) | more than 5 years ago | (#25447337)

(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 (0)

Anonymous Coward | more than 5 years ago | (#25447471)

the scary thing is the site actually exists! (I dont think any slashdotter would have had the time to set it up in the minutes follwing this post)

Re:Announcing DNAHarmony.com (1)

couchslug (175151) | more than 5 years ago | (#25447651)

"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.

Re:Announcing DNAHarmony.com (1)

Higaran (835598) | more than 5 years ago | (#25448131)

There was a scifi show a while back, I cant remember the name of it. There was a post WW3 type earth, and most people lived in few cities because anythone that chose to life outside would probably get mutated from the radiation. Everyone that lived in a city had a dna scan and a coresponding jewel implanted in thir skin, at the chest just under the neck line. The people were told that if they mated with someone of the same type jewel as them that there would be less birth defects and have a superior child or something to that effect. I haven't seen it in over 15 years.

New facebook app! (0)

Anonymous Coward | more than 5 years ago | (#25447221)

7 of your friends have similar DNA! Compare yourself with thousands of other people with DNACompare!

Interesting, but I'll keep my genetics to myself. I'd rather not know that I have very common genes with someone I hate.

Re:New facebook app! (1, Funny)

Anonymous Coward | more than 5 years ago | (#25447395)

I would be more concerned with having common genes with someone whom I love.

Actually, now that I think about it, that might be a good thing to know...

On the other hand, I probably shouldn't worry about that, as pheromones make people attracted to those who are genetically dissimilar to them.

On the third hand, I am on slashdot. I don't have a girlfriend!

Coming from someone who cares about security (2, Insightful)

BorgAssimilator (1167391) | more than 5 years ago | (#25447229)

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 (4, Insightful)

dex22 (239643) | more than 5 years ago | (#25447357)

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:Coming from someone who cares about security (0)

Anonymous Coward | more than 5 years ago | (#25448101)

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....

In California, they don't have to force it out of them -- we've already given the state the right to "collect" (doesn't that sound agreeable and non-intrusive?). Yes, indeed -- a couple of years back, the most retarded among us voted to allow collection of a DNA sample UPON ARREST!!! Not upon indictment or conviction, but UPON ARREST.

If a cop wants your DNA, all he has to do is come up with a bullshit (but defensible) reason to "arrest" you. Any cop who doesn't know a halfway justifiable way to provoke you into an arrestable position wasn't paying attention in his police academy classes. Just like the bullshit, uncontestable "weaving in traffic" charge to stop you and sniff around your car, where he could "in good faith" claim to smell pot, triggering a full search of your entire car, including the trunk, where you store the dead bodies awaiting burial in shallow graves.

Of course, when tried and found not guilty, you can "apply" to have the sample destroyed. Anyone want to bet the "destruction" is carried out under supervision of you and your lawyer and documented as unusable in any past or future case against you? Just lay your wager on the black square marked "fucked".

Hah! captcha = "consents".

I'm in ur base... (0)

Anonymous Coward | more than 5 years ago | (#25447241)

... decoding ur alleles.

Gattaca-gattaca-POW!

What doesn't happen to 10 will happen to 10M. (2, Insightful)

Anonymous Coward | more than 5 years ago | (#25447283)

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...

"Shocking disregard..."? (1)

dex22 (239643) | more than 5 years ago | (#25447287)

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 Review Boards continue to carefully protect human participants from the subtle or obvious discrimination that can occur when this type of information can be associated with a person's identity.

Volunteer (1)

Arthur B. (806360) | more than 5 years ago | (#25447301)

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 (3, Insightful)

circletimessquare (444983) | more than 5 years ago | (#25447311)

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

Vanity press for skin flakes (0)

Anonymous Coward | more than 5 years ago | (#25447333)

Not sure what we might learn that we couldn't learn with anonymous sequences and surveys.

And the genome has lost that be-all-and-end-all status that it had years back. After all the genome is just a dead sequence that doesn't take into account all those epigenetic changes that come from living and making choices in each cell line or even each individual cell.

If this is voluntary, I'm for it, but if it is used in future as the thin end of the wedge (look, it turned out allright, so lets start such screening for everyone perhaps with the start or universal healthcare), then it will be gattaca time, and they will make us fly to space in double-breasted suits. Yuk.

Helping the project (1)

Andr T. (1006215) | more than 5 years ago | (#25447341)

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 know Ms. Dyson fetish: space sex.

Summary totally misses the point (2, Insightful)

confusednoise (596236) | more than 5 years ago | (#25447349)

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 (2, Funny)

PearsSoap (1384741) | more than 5 years ago | (#25447373)

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.

Gattaca (1)

Dragonfire00 (1099913) | more than 5 years ago | (#25447407)

Gattaca!!

Re:Gattaca (1)

maxume (22995) | more than 5 years ago | (#25448027)

The human spirit will overcome this 'horrible' abuse?

for the lucky 8... (1)

brainwash (923821) | more than 5 years ago | (#25447433)

...time to unlock those plasmids

Notihng New (1)

gooman (709147) | more than 5 years ago | (#25447435)

People have always been able to determine someones sex by looking into their jeans.

Oh wait...

Can I release mine under GPL? (2, Interesting)

Anonymous Coward | more than 5 years ago | (#25447437)

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 (3, Funny)

EmbeddedJanitor (597831) | more than 5 years ago | (#25447573)

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.

Face Recognition? (1)

nurb432 (527695) | more than 5 years ago | (#25447449)

Does this get added to that database discussed earler? Oh, and along with the tracking of your daily activities ?

Sylar sez (2, Funny)

dedazo (737510) | more than 5 years ago | (#25447451)

Let's go make a list, Mohinder!

strangely (2, Insightful)

Dolphinzilla (199489) | more than 5 years ago | (#25447457)

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 (4, Funny)

Sperbels (1008585) | more than 5 years ago | (#25447491)

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

Re:Masturbation Gene (1)

nrlightfoot (607666) | more than 5 years ago | (#25447629)

No need to wait for that, just look at their myspace pages.

Re:Masturbation Gene (0)

Anonymous Coward | more than 5 years ago | (#25447815)

I propose a novel method where we look not at the qualities of any one particular gene, but rather at the quantity of genetic material that can be recovered from places such as keyboards, tube socks, suspiciously located rags, and thrown-away tissues.

Mark my words, it won't be long before insurance company representatives will stand outside on garbage day and dig through your used kleenexes to determine your risk of prostate cancer.

Re:Masturbation Gene (0)

Anonymous Coward | more than 5 years ago | (#25447891)

Actually there is some research that rs4795541 [snpedia.com] is linked to premature ejaculation

Re:Masturbation Gene (0)

Anonymous Coward | more than 5 years ago | (#25448121)

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

In the context of slashdot, that would be like moving to Arkansas where there are only three sets of DNA for the whole state.

Oh hey (1)

kjzk (1097265) | more than 5 years ago | (#25447495)

See! Nothing happened! I'm sold.

/sarcasm

Please, please, please... (1)

msauve (701917) | more than 5 years ago | (#25447513)

don't anyone clone Esther using her genome. One is more than enough.

Lets hope it encourages others (1)

nx6310 (1150553) | more than 5 years ago | (#25447527)

Who knows with all that collective intelligence and distributed computing power, or what can be discovered by some kid with 12 xbox 360's lying around analyzing this info?

Kudos to the fantastic ten.

Privacy is personal (2, Insightful)

ark1 (873448) | more than 5 years ago | (#25447529)

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 (5, Insightful)

guyminuslife (1349809) | more than 5 years ago | (#25447553)

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.

DNA Sequences will not be patentable now (2)

schwep (173358) | more than 5 years ago | (#25447593)

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 (1)

philspear (1142299) | more than 5 years ago | (#25447597)

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.

Re:Good goal (0)

Anonymous Coward | more than 5 years ago | (#25447855)

Yeah, you're totally gunna steal their DNA and use it to enhance your own. It's only fair.. since the global DNA crunch, no one has any DNA to spare.

Phil, sometimes your really make me want to facepalm.

Re:Good goal (1)

Belial6 (794905) | more than 5 years ago | (#25447875)

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.

Replay? (2, Interesting)

nog_lorp (896553) | more than 5 years ago | (#25447639)

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....... (4, Funny)

Anachragnome (1008495) | more than 5 years ago | (#25447719)

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."

Oh, very young. (0)

Anonymous Coward | more than 5 years ago | (#25448015)

Esther Dyson, a trainee astronaut

I have to wonder how young and tender someone needs to be to think that a possible trip to space is the most interesting link to E.D. [wikipedia.org]

"Shocking disregard..."? (1)

clint999 (1277046) | more than 5 years ago | (#25448065)

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 neede

Patent Trolls! to the Batcave! (0)

Anonymous Coward | more than 5 years ago | (#25448223)

Quick! Patent those sequences.
Sue the individuals for infringement ...profit!

Is this THE Esther Dyson? (1)

Ritchie70 (860516) | more than 5 years ago | (#25448307)

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.

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