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The Personal Genome Project Hits the Web

CmdrTaco posted more than 5 years ago | from the are-those-bugle-boy-genes-you're-wearing dept.

Biotech 87

Ian Lamont writes "The Personal Genome Project has released the data sets and descriptions of traits, ethnic background and other information of the first ten volunteers, which include the project director and nine other people with backgrounds in genetics, medicine, and biotechnology. While the human genome was first sequenced at the beginning of this decade, what's special about this project is these 10 participants are having their names, genome, and other personal data gleaned from questionnaires shared openly on the Web, where interested researchers can freely access them. One of the ultimate aims of the project is to create a public database of 100,000 volunteers that researchers and other parties can use to determine what traits, diseases or other characteristics are associated with specific genetic markers. When asked why volunteers are requested to attach their names to the Web records, the project director said the data could be used by researchers in other fields outside of genetics, including forensic science and historical research. While this project opens the door for some interesting and potentially life-saving research, there may also be difficulties or problems for people whose records are posted on the Web. Would you participate? Would you share your name, along with your genome, disease history, and traits? Why or why not?"

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Whoa... for a sec i thought i saw... (3, Funny)

davidsyes (765062) | more than 5 years ago | (#25547819)

Persona GNOME Project...

Re:Whoa... for a sec i thought i saw... (4, Funny)

X0563511 (793323) | more than 5 years ago | (#25547877)

Learn to read then.

Re:Whoa... for a sec i thought i saw... (0)

Anonymous Coward | more than 5 years ago | (#25547881)

One thing at a time buddy. Research now, cloned cyborg zombies later.

Re:Whoa... for a sec i thought i saw... (0)

Anonymous Coward | more than 5 years ago | (#25548179)

I want my own personal gnome! I would also like a pony, kthxbye.

Re:Whoa... for a sec i thought i saw... (1)

aiht (1017790) | more than 5 years ago | (#25550927)

Yeah, I'm holding out for the Personal KeDE [wikipedia.org] project.

Privacy (5, Insightful)

internerdj (1319281) | more than 5 years ago | (#25547823)

I think it is a bit overdone in many cases. I'm quite free with my personal information compared to some of my friends, but I think it might be a scary thing to provide my medical and genetic history anywhere it might be accessed by my insurance company. And that alone is a sad, sad thing.

Re:Privacy (1)

Trojan35 (910785) | more than 5 years ago | (#25548285)

Or employers, or banks...

Re:Privacy (1)

electrictroy (912290) | more than 5 years ago | (#25552659)

Go watch GATTACA.

The explains why you should not allow anyone to see your genetic code.

Re:Privacy (1)

Odabi (982392) | more than 5 years ago | (#25548321)

I've got one word to say to that... word...

What privacy? (2, Interesting)

denzacar (181829) | more than 5 years ago | (#25549791)

but I think it might be a scary thing to provide my medical and genetic history anywhere it might be accessed by my insurance company.

You ever heard of "investigators"?
Insurance companies have entire divisions of those.
Granted - it costs way too much to use them just to get your premium up, but be sure that when the time comes for you to actually USE your insurance for intended purposes - someone, somewhere will happily give your private info to "The Investigator" in exchange for a relatively small amount of money.
Or no money at all. Much info can be acquired just by asking the right questions in the right way.

And in most cases - your private information is anything BUT private.
A true story. Persons described live couple of hundred meters from me and the details are "Just between us girls..." kind of thing.

Back in the 1970s, my mother's (and father's) generation was fresh out of university, finding places to work at (it was one job for entire life back then), places to live at and people to live with for the rest of the life.
One of my mother's acquaintances - I'll call her Alice - could not decide which one of her boyfriends would make a better husband.

Both looked, acted and earned (VERY important category for potential husband) about the same...
But who is to say that any of that will last, right? Today's moneymaking Apollo might be bald and broke tomorrow.
To eliminate as many unknowns as possible Alice, who was a resourceful young woman, went to one of her friends who was a doctor at the local hospital and asked if she could get her the medical records of both of her boyfriends.
She could, and she did. Cause they were friends, and it was "Just between us girls...".

So, Alice compared their medical records and picked the healthier one. They eventually got married, had kids and lived happily ever after.
The other guy is still alive and well too. Married, had kids etc. Only he didn't get to be Mr. Alice.

 

 
And don't get me started on "casual reading" of other peoples records by the people working for the phone company.
There is no such thing as privacy. Only "private" information you have is that what only you know about.
Be extra careful if you talk in your sleep.

NOT SO SAD (0)

Anonymous Coward | more than 5 years ago | (#25550295)

I wouldn't mind donating my genetic information after I was dead.
In fact, just about everyone who has ever donated their bodies
to Science might qualify as a donor for this project!

Re: Insurance companies (1)

pan_sapiens (647704) | more than 5 years ago | (#25552125)

In theory, the problem of insurance companies and employers discriminating based on genetic information in the US has be 'solved' by the passing of the Genetic Information Nondiscrimination Act (GINA) this year. I say in theory, because I expect they will find some loophole to enable them to exploit this information anyhow. But we will have to wait and see .... ( http://spittoon.23andme.com/2008/05/21/its-official-bush-signs-gina/ [23andme.com] )

Re:Privacy (1)

daem0n1x (748565) | more than 5 years ago | (#25552703)

That's why you need a public and free health care system, and bloodsucking insurance companies should go down the drain.

Re:Privacy (1)

internerdj (1319281) | more than 5 years ago | (#25553503)

Unfortunately, at least currently, our public and free to some health care system is also bloodsucking. I doubt that would change even if it was the only kid on the block.

Come again? (4, Insightful)

Aphoxema (1088507) | more than 5 years ago | (#25547849)

Sorry, what did you ask, again? I was too busy registering to participate in one of the few things in my life I can do that can actually benefit all of humanity.

Re:Come again? (4, Insightful)

davester666 (731373) | more than 5 years ago | (#25548181)

Yes, it can benefit everybody except yourself. At best, your DNA will show you have no predisposition for various diseases, so you can continue to get health care insurance. However, if you show any predisposition to any disease, the likelihood of you being able to get insurance goes down really fast.

And it's not just you. Depending on the predisposition, having this information public can also affect your children's ability to get insurance (as there are plenty of conditions that may be inherited).

Re:Come again? (1, Insightful)

maxume (22995) | more than 5 years ago | (#25548563)

Insurance companies are better at being insurance companies than you are.

Pretty much everybody has a predisposition to something, and the research backing these predispositions isn't particularly rock solid (that is, someone who drinks a lot will probably have more health problems than someone with a gene that has sort of been associated with some forms of a particular cancer), so they would certainly use the information, but it wouldn't be the denial of coverage that you are talking about, it would be slightly higher rates.

Re:Come again? (3, Interesting)

davester666 (731373) | more than 5 years ago | (#25548757)

How about Huntington's, for example. If you have the gene, it's not a question of if you get the symptoms, but when. For the purposes of insurance, this makes it a pre-existing condition.

Yes, there are some conditions that current genetic testing will indicate that you have a higher percentage chance of getting that condition. But there are other conditions which have pass/fail testing. If you fail one of those tests, you don't get to purchase insurance for that condition. At best, you get to negotiate a payment plan to cover all the fee's (which may still be called insurance, but really isn't).

As an aside, there are companies that do this. I was researching dental insurance plans, and there was one that I found that just looked at how many people would be in the plan, estimated how much it would cost for their dental care for the year + 10 %, and the monthly payment was that amount divided by 12. After twelve months, they would total up the actual charges, add 10%, then either refund the extra to you if it was less or you had to pay the extra if it was more than what you had already paid. It was called insurance, but it really was just straight financing.

Re:Come again? (1)

maxume (22995) | more than 5 years ago | (#25549327)

I see two solutions. One is to just have society pick up the tab (I don't see that it makes a great deal of sense to slice subsidized health care into a bunch of arbitrary pools). The other is conception insurance (that is, actual insurance against the potential baby having a genetic condition, not contraception or something snarky). Of course, people with a family history of genetic disorders would have to pay quite a bit more for conception insurance than people with cleaner histories, but I'm not sure I have a problem with that.

Re:Come again? (0)

Anonymous Coward | more than 5 years ago | (#25549049)

anon because of previous mod, but you win
BEST FIRST LINE OF THE THREAD!!

Re:Come again? (1)

Ghubi (1102775) | more than 5 years ago | (#25548849)

Maybe GP lives in Canada, or France, or Cuba, or...

Re:Come again? (1)

blackest_k (761565) | more than 5 years ago | (#25549017)

With a public funded health service, you may well find plenty of British Volunteers. Honestly it is not that much in tax to ensure you get the treatment you need. A basic pension when you retire and a number of other benefits.
  It's just such a pity dental care doesn't get similar provision.

Is it even necessary for living volunteers? surely someone who has reached the end of their life and has a full medical history would be a better subject.

     

Re:Come again? (4, Interesting)

evilNomad (807119) | more than 5 years ago | (#25549319)

How I pity the citizens of what they themselves call the greatest nation on earth, how can you not see the benefit of research into DNA? How can you live with a health care system that is so broken that you fear the very breakthroughs that can save your live some day?

All the (socialist as I am sure McCain would call us) countries of the world will gladly have all citizens screened for various DNA predispositions, you know why? Because we can use it to make health care cheaper, if we can prevent diseases we save a ton of money, if we can catch cancer and other diseases before they spread, we save a ton of money, oh and lives will most likely be saved as well, not that that seems to have anything to do with healthcare in the USA..

I honestly do pity anyone that has to fear their own health care system..

Re:Come again? (1)

FooAtWFU (699187) | more than 5 years ago | (#25551207)

Part of the huge problem is that people think they want "health insurance" when what they actually want is a healthcare plan (and one that other people pay for when the things get rough). I mean, you don't see people crashing their car and then saying "oh, I should get some car insurance for that, and they'll pay for it" or having their house burn to the ground and thinking "oh, I should get some fire insurance, and that will pay for it". It doesn't work that way. But people try to twist it until it does.

In the ideal world, everyone would get tested for everything plausible (so you could take care of it as soon as possible) and they'd have (dirt cheap) insurance for everything they couldn't predict, and the rest of their healthcare costs would either come out of their pocketbooks or their employers' pocketbooks or whatever they were able to lobby the government for out of everyone else's pocketbooks. Instead, we try to turn the industry into another way to redistribute wealth, but it's totally messed up, and not only is there incentive to avoid predicting problems, you're also essentially subsidizing the health care costs of one group by increasing the health insurance costs of another, and that's a very, very regressive "tax" structure.

Re:Come again? (1)

infinitelink (963279) | more than 5 years ago | (#25552047)

Yea, but here we don't compete with the government, as in countries like Canada, and we don't have lines, nor are we scheduled and forced to wait at the whim of an approved provider: we go where we want. We have a non-socialist system, and yet social help is readily available: I know, it provided me the means to battle cancer; in fact, if your life is threatened, here we do require treatment: if it's not, it's very likely you can get help. And all without mandating much; where they do that, clinics tend to go out of business, as more than a few doctors have told me: and they're not working for bajillions anymore...a lot of them are practically doing charity work, working for beans after having spent their life to get prepared. My grandfather, a doctor, doesn't want me to become one. The U.S. doesn't have a perfect system, but it's got quite a good capital-social balance without needing the government to come in and kill it for everyone; but last time I knew anybody that needed help for anything, they didn't not get it. Politicians calling for universal healthcare don't give a damn: they just want to fatten their voting bases, to the masses of idiots who think it's not going to be them paying for "free" medicine. There's a reason the U.S. leads the world in the medical field...and funds research around the world where they don't have the dough, including Europe. Speaking of funding: http://www.youtube.com/watch?v=HCXqKEs68Xk&feature=related [youtube.com] : ) I'm not a Democrat (or a Republican), and I don't think this alone disqualifies someone from office...but it does show a greater need for scientific literacy, in basic concepts like "model organisms". Personally, a women with a child who has down syndrome should be focusing on the child while it's in its formative years: don't think she realizes that it could need to dominate her time (vs. politics); down kids can actually be trained heavily, and very heavily educated, to the point of near-normalcy, which will save you time in the long run, and otherwise they're just very time-consuming: and often need regularity, and their parents: something politics and Washington cannot provide.

Re:Come again? (1)

pretygrrl (465212) | more than 5 years ago | (#25560591)

that can save your live some day?

All the (socialist as I am sure McCain would call us) countries of the world will gladly have all citizens screened for various DNA predispositions

yeah except you can't afford the screening, can you? or new scientific discovery? u all just leach off of us. tell you what. you go find a list of scientific discoveries from any 1 year during the last 20 that isn't completely and utterly DOMINATED by U.S. paid-for research, and then MAYBE ill think about socialized health care, ok?

Re:Come again? (1)

evilNomad (807119) | more than 5 years ago | (#25570371)

Oh give me a break, because I know you did not just call a Scandinavian country poor.. Hell, I actually even worked for the bioinformatics department at my university, but I guess none of our published articles are worth anything.. And of course a country of 300 million will churn out more research than a small nation with 5 million inhabitants, but we do our fair share of research.. Long story short, we can afford all the health care we need, including DNA screening... And I actually do not see your link between nationalized health care, and money invested into research, what exactly do those two have to do with each other? The taxes we pay to the state that goes into research have nothing to do with our health care system, as it is not the state that runs that..

Re:Come again? (1)

pretygrrl (465212) | more than 5 years ago | (#25570511)

And I actually do not see your link between nationalized health care, and money invested into research, what exactly do those two have to do with each other? The taxes we pay to the state that goes into research have nothing to do with our health care system, as it is not the state that runs that..

nationalized health care == paltry funding == no new research sponsored. and of course u dont NEED to pay for research because WE do so. i wasnt comparing usa w. 300 MM to sweden. i was comparing to the eu. once again, please show me a single list of discoveries of note, for any year during the last 20, that isnt completely and utterly dominated by U.S. paid-for research. im saying nationalized anything sux because governments cannot by their nature make purchasing decisions as efficient as a free market can.

Re:Come again? (1)

evilNomad (807119) | more than 5 years ago | (#25571571)

I don't think you know how research works in Denmark where I live, the state is funding basic research, not the health care system, I am having a hard time seeing how you can key these two together? And I fail to see why we are bringing the EU into this? I have no idea about research results, but I very much doubt that the US single handily does all the research in the world, but as I have no sources to back this up I wont comment on it. My point however is that I don't care about results for the EU, Denmark is a sovereign state, we are not part of some "united states of Europe" country, so please just keep it to my country..

Re:Come again? (1)

arbitraryaardvark (845916) | more than 5 years ago | (#25550469)

You guys are both missing the point. Sure, it benefits humanity, fine. But it would benefit me.
The more I know about my medical situation,and the sooner I know it, the better choices I can make. I went to the site to sign up, but the small print says they want $1000, so that lets me out - I have other priorities for $1000.

Post is insightful and underrated.

Re:Come again? (1)

tsa (15680) | more than 5 years ago | (#25551253)

From the website: Even though participants can enroll at no cost, we encourage donations.

Re:Come again? (1)

arbitraryaardvark (845916) | more than 5 years ago | (#25551565)

Right, but on the application, it says there's a $1000 fee. You can apply to have that waived, but I wouldn't count on it.

Re:Come again? (1)

tsa (15680) | more than 5 years ago | (#25551709)

I didn't delve in that deep. But that means basically thet you have to pay $1000,- to have other people earn money with your genes. I mean, if the research on your genes leads to certain medication, that will lead to lots of profit, of which you will never see a dime. Besides, people can patent genes that are specifically yours, for instance if you have an interesting discrepancy in one of your genes. No thanks, I will never participate in this project.

Re:Come again? (1)

davester666 (731373) | more than 5 years ago | (#25552395)

Sure, you can make better choices for yourself. But others also use this information to make decisions that affect you, and not necessarily to your benefit.

It really depends on the individual, the outcome and where they live.

Currently, if you happen to live in the US, and are not independently wealthy, it is to your personal advantage not to have testing like this done.

Say you want to be tested for Huntington's Disease in the US. There is a genetic test for it that is basically pass/fail. You either have it or you don't. If you have it, you will lose control of your body and mind, and die a slow, painful, expensive death around the midpoint of your normal lifespan.

You can either do:

1) Be tested for Huntington's. If you pass (as in, you don't have it), score one for you. If you fail however, you now know you will die an early death (and have a 50% likelihood of passing it on to each of your children). Also, you will need a lot of money for your healthcare, fairly quickly, as now, you have to write down that you have Huntington's on every health care application, resulting in your denial (possibly for any coverage, not just Huntington's related) for insurance.

or

2) Don't get tested for Huntington's. Now, you don't know if you have the disease, so you don't need to write down that you have it on health insurance applications. You are covered by insurance when the symptom's hit, and you're medical bills are largely paid for by insurance (assuming they don't weasel out of it).

From the point of view of the insurance company, personal knowledge equals personal responsibility (if you know about it, you're responsible for handling it).

And this isn't some theoretical discussion. Not only children of parents with Huntington's need to decide whether to find out and be disqualified from getting insurance or not finding out, but parent's need to decide if they should tell their children that they (that one or both parent's have Huntington's), as then the children have to write down on applications that the parent's have it (also possibility resulting in denial for insurance).

Gattaca isn't that far away...
 

Re:Come again? (1)

arbitraryaardvark (845916) | more than 5 years ago | (#25557947)

Given that I don't have medical insurance, never have had as an adult, I don't run into that set of perverse disincentives. I'm a cash buyer. I'm enjoying my retirement now in my 40s.

Here's that wired article on 23andme, a google-backed $1000 genetic screening company.
http://www.wired.com/medtech/genetics/magazine/15-12/ff_genomics?currentPage=all [wired.com]

Sergey Brin's blog, http://too.blogspot.com/ [blogspot.com] , is about Parkinson's not Huntingdon's, I had those mixed up. But the principle is the same - if I'm at high risk of some rare disease, all I have to do is find a kabillionaire to fund research and I can ride his/her coattails.

If genetic screening showed that I have a high risk of some rare and currently fatal disease, then I refocus to become an expert in that disease and make sure I'm first in line for the beta testing on new treatments or cures.

post is informative but inciteful.

Re:Come again? (0)

Anonymous Coward | more than 5 years ago | (#25548347)

For every do-gooder there's probably two people not to be trusted.

Re:Come again? (1)

jc42 (318812) | more than 5 years ago | (#25548455)

I was too busy registering to participate in one of the few things in my life I can do that can actually benefit all of humanity.

Well, you can expect to be punished in due time. ;-)

Actually, this is a situation similar to the old "prisoner's dilemma" game. That's the game theory name for a class of situations in which, if everyone cooperates, everyone benefits, but if some people cooperate and others defect, the defectors win and the cooperators lose.

There is a small chance that having your info in this database will enable research that will provide medical help for you later in life. But there's a much larger chance that the info will lead to discrimination against you in insurance and jobs. So on balance you'll most likely be punished for contributing.

(But you probably won't be punished as severely as the people who contribute to the public good their discoveries of software security flaws, as in the story earlier today. ;-)

Re:Come again? (1)

Aphoxema (1088507) | more than 5 years ago | (#25550301)

I'm really not worried about insurance, and not so worried about jobs. I've come so damn near death so many times it just always feels like it's around the corner anymore. I don't have to cling to my own life, now I cling to everyone else's, and despite my asthma, I do what I can to help but it always seems so very little.

I'm already donating my body to science, this way I can do it before I'm dead.

Re:Come again? (0)

Anonymous Coward | more than 5 years ago | (#25549773)

If this is one of the few things in your life that can benefit all of humanity, you have set the bar too low. Aim higher!

Re:Come again? (1)

Aphoxema (1088507) | more than 5 years ago | (#25551503)

My dreams of becoming a superhero were trounced when I found out exposure to gamma rays only resulted in a tingly sensation and another pair of tentacles I didn't have before.

My dreams of running for president were shattered when I found out that it's actually selected by a gnome who resides in Miami and who's name must be never revealed for if it is spoken he will be stricken of his power. I asked if he'd pick me, he asked if I liked long walks on the beach, I said I've never been on a beach, he said try it sometime and no he wouldn't pick me.

My dreams of coming up with something witty to say on Slashdot were mercilessly smashed when I realized that I was just too damned tired from the Benedryl I took an hour ago.

I'll aim higher tomorrow, maybe.

Re:Come again? (1)

whackco (599646) | more than 5 years ago | (#25550013)

It's interesting because this company I found: AccessDNA [accessdna.com] are doing the same thing, but not making the informating publish. They provide a personalized Genetic report for free just for answering these questions.

Vote BARACK OBAMA! (-1, Offtopic)

Anonymous Coward | more than 5 years ago | (#25547871)

hope and change baby!

Somebody should make this into a simulation (4, Funny)

TheModelEskimo (968202) | more than 5 years ago | (#25547945)

Someone should take the available profile info and turn it into a simulation. I would like to see how Participant #2, the vegan who used to suffer from Lyme disease, would fare in a fight against #3, the frequent traveler who suffers from "severe, short-term (24 hours) diarrhea," and is near-sighted with contacts.

Also, I'd like to know, what if we had a breakdancing contest, RIGHT now. Who would come out on top? How would Participant #10, who had a "hip growth" removed at birth, do the Windmill? Etc. Inquiring minds want to know.

Re:Somebody should make this into a simulation (2, Interesting)

Ethanol-fueled (1125189) | more than 5 years ago | (#25550059)

I'd like to mine the hell out of the data(safely and privately under academic/research sponsorship) to see how strongly environment correlates with genetics to see just what makes people who they are.

Re:Somebody should make this into a simulation (1)

SlashdotMeNow (799901) | more than 5 years ago | (#25551527)

Participant #8 (Steven Pinker) wrote a great book on the current state of the 'nature vs nurture' question - it's called 'The Blank Slate'

I'd absolutely share (0)

Anonymous Coward | more than 5 years ago | (#25547967)

I have nothing to hide and believe in personal transparency at all times, in all things.

Re:I'd absolutely share (1, Funny)

Anonymous Coward | more than 5 years ago | (#25548035)

Sure, you say that now, but when all your past girlfriends find out that it was YOU who fathered their children, and they all come after you for child support, you will wish you had never been born, and it will be too late.

Re:I'd absolutely share (0)

Anonymous Coward | more than 5 years ago | (#25548187)

Sure, you say that now, but when all your past girlfriends find out that it was YOU who fathered their children, and they all come after you for child support, you will wish you had never been born, and it will be too late.

Women can't father kids, but THANKS FOR PLAYING!

Re:I'd absolutely share (1)

butalearner (1235200) | more than 5 years ago | (#25548195)

I have nothing to hide and believe in personal transparency at all times, in all things.

I would share too, because that's only because I represent genetic perfection, and I want all the ladies to know it.

Re:I'd absolutely share (1)

innerweb (721995) | more than 5 years ago | (#25551401)

Lazarus, is that you?

Hey, It's Open Source (1)

El Lobo (994537) | more than 5 years ago | (#25547969)

Of course EVERY SINGLE person here on Slashdot would participate. After all, it's Open Source and thus, it must be good...We at /. have no double standard and like everything to be OS, inclusive our own business software, etc. Or...?

your name (4, Insightful)

forceofyoda (855030) | more than 5 years ago | (#25547989)

If you have to attach your name to a document about yourself, you're probably a lot less likely to lie (depending on who you are). It makes sense to me that they'd want a name, but I'd definitely feel a little funny having all that stuff about me on the webs.

Then again, sites like peekyou [peekyou.com] already have way more information about me than I expected.

Re:your name (1)

Ghubi (1102775) | more than 5 years ago | (#25548921)

Except in the cases where knowing the information will be published with your name on it makes you a lot more likely to lie.

Re:your name (1)

lazlo (15906) | more than 5 years ago | (#25553783)

Actually, the real reason for attaching names is fairly obvious: In 100 years, when they reconstruct these people from their recorded genomes, it'll be nice to know what to call them. Well played.

Personalized advertising based on your genome... (2, Funny)

Quantos (1327889) | more than 5 years ago | (#25548049)

That could be good or bad. I wouldn't keep getting spam about Male Enhancement, but they would pepper me for online gambling.

Re:Personalized advertising based on your genome.. (-1, Flamebait)

Anonymous Coward | more than 5 years ago | (#25548237)

People who know you say it the other way around.

the issue is not one of privacy (3, Insightful)

circletimessquare (444983) | more than 5 years ago | (#25548153)

the issue is making a sacrifice for the betterment of humanity. 100% absolutely, you will recieve negative impediments in your life for participating in this project. losing your privacy is a tiny one. but you do it anyway, because you are happy to make the sacrifice for the betterment of all

you don't make an important contribution to any cause, ideology, or project in this world without pain. if you make a contribution, and there is no pain, then it also isn't important

those who contribute to this project will suffer embarassingly and perhaps romantically and financially for contributing. and god bless them for that. the consideration of their privacy is but the beginning of what the ywill sacrifice, so if loss of privacy gives you pause, this projec tis really not for you, because you haven't even begun to fathom the deeper sacrifices here

The impediments are wholly avoidable, though (1)

Rix (54095) | more than 5 years ago | (#25548273)

Is attaching names to the data really so valuable to justify likely persecution of the participants, as well as introducing selection bias to the sample?

Re:the issue is not one of privacy (4, Insightful)

TubeSteak (669689) | more than 5 years ago | (#25548451)

the consideration of their privacy is but the beginning of what the ywill sacrifice, so if loss of privacy gives you pause, this projec tis really not for you, because you haven't even begun to fathom the deeper sacrifices here

Deeper sacrifices... like the loss of privacy for your blood relatives?

You aren't the only one with that DNA.
Sharing it exposes more than just your genome.

Re:the issue is not one of privacy (1)

Amenacier (1386995) | more than 5 years ago | (#25549151)

You aren't the only one with that DNA. Sharing it exposes more than just your genome.

Exactly - if you do happen to be carrying a recessive disease allele, your relatives immediately start to wonder if they carry it too...which isn't as bad as if you carry a dominant allele like the one for Huntington's. If they find this, then automatically one of your parents knows they have it (whether they wanted to find out or not) and your children know they have a 50% chance of getting this debilitating disease.

I know people will say "better to know than not", but the fact remains that many people just don't want to know - they'd rather just take life as it comes, rather than living with the knowledge that they'll be very ill in a few years time.

Hopefully the participants will have discussed it with blood relatives before participating.

Re:the issue is not one of privacy (1)

brit74 (831798) | more than 5 years ago | (#25548487)

Rather than a little "no pain, no gain" argument that you do, I would suggest that organizers of the database find ways to protect the privacy of individuals contributing. It's not like making the subject's name public is terribly important or even useful. They want to connect the DNA to various attributes (diseases, etc), and adding a name isn't helpful in making those connections. So: hiding names would have no impact on the actual benefits of the study, and would maintain privacy. Yeah, I know that's in contradiction to "no pain, no gain", but not everything works that way.

Re:the issue is not one of privacy (2, Interesting)

khallow (566160) | more than 5 years ago | (#25550061)

the issue is making a sacrifice for the betterment of humanity. 100% absolutely, you will recieve negative impediments in your life for participating in this project. losing your privacy is a tiny one. but you do it anyway, because you are happy to make the sacrifice for the betterment of all

The issue is also one of privacy. Else most of the posts under this article wouldn't be discussing the privacy angle.

you don't make an important contribution to any cause, ideology, or project in this world without pain. if you make a contribution, and there is no pain, then it also isn't important

Typical sacrificial logic. Lot of things are worthwhile without pain. Lot things take effort and grit and aren't worth a whit. The sacrifice doesn't in itself make something worthwhile or not.

those who contribute to this project will suffer embarassingly and perhaps romantically and financially for contributing. and god bless them for that. the consideration of their privacy is but the beginning of what the ywill sacrifice, so if loss of privacy gives you pause, this projec tis really not for you, because you haven't even begun to fathom the deeper sacrifices here

But people such as yourself, who buy into the sacrificial logic, can somehow understand better what is really sacrificed? I don't buy it. My take is that the typical sacrificer (which you, cts may or may not be) is willing to sacrifice simply because they have less understanding of what is lost.

Here's my take. "A clever person solves a problem. A wise person avoids it." (Einstein) This approach creates a problem with privacy that they solve by only picking people that at the time are willing to relinquish their right to privacy. The traditional medical approach to medical information doesn't have this problem. It's illegal to exploit or distribute medical information. Period. That keeps the problem from mattering in the first place. There's no reason to distribute medical information in this way. It's just a lazy shortcut for doing things the right way. Somewhat ironic given all the talk of sacrifice in the first place that this organization sees privacy as an obstacle to be overcome rather than something important to be sacrificed for.

Re:the issue is not one of privacy (1)

srothroc (733160) | more than 5 years ago | (#25550825)

How does attaching your name and sacrificing your privacy affect your contribution to the world? It doesn't. They still have your personal history and genome. You could name yourself "Bruce Wayne" and the data would still be the data.

How does it affect you? Immensely.

No Worries (5, Funny)

ParanoiaBOTS (903635) | more than 5 years ago | (#25548175)

I am protected by Lifelock, so my information can't be stolen [cnn.com] right?

It can hard to tell who is who (1)

thetoadwarrior (1268702) | more than 5 years ago | (#25548215)

Their names don't show up on the profile so the only one with clear privacy problems is the single black guy. He should have rethought this one.

Why? (0)

Anonymous Coward | more than 5 years ago | (#25548253)

WhyTF would I share it? Do I gain anything, or I just play in the game laid out by others?

Hmm (0)

Anonymous Coward | more than 5 years ago | (#25548267)

I'll be happy to donate some of my 'genetic information' to any female 'researcher' who wants it

PGP makes genetic info safer (0)

Anonymous Coward | more than 5 years ago | (#25548393)

I fail to see how having my genome openly published and attached to my identity is a bad thing at all. Why should this raise my risk for higher insurance premiums or dropped coverage? It has been clearly established that the vast majority of Americans (I live in the USA) are firmly against genetic discrimination. If my premiums were to go up after my genome is published, I have clear-cut evidence AGAINST the insurance provider. I mean, seriously, put me in front of a jury and see how THAT turns out.

How can so many slashdotters be steadfastly for open voting machines, but so wishy-washy about genomes?

Wait, wait, wait.. (1)

Jordan ez (1270898) | more than 5 years ago | (#25548615)

What happens when we can artificially reconstruct an entire persons genome? All you'd have to do to frame a person is download that person's DNA, manufacture the chromosomes in copious quantities and leave it at the scene of the crime. Granted that kind of tech is probably 10 or 20 years out but it still seems worrisome.

Re:Wait, wait, wait.. (1)

RDW (41497) | more than 5 years ago | (#25550307)

If you have the genome sequence and know the markers that are likely to be tested, e.g. the FBI's CODIS Core STR Loci:

http://www.cstl.nist.gov/strbase/fbicore.htm [nist.gov]

then you could potentially engineer a fake sample (covering just the forensically targeted regions) using only existing technology...

Think open source (4, Insightful)

chord.wav (599850) | more than 5 years ago | (#25548623)

Let's say you have a genetic "bug". Wouldn't it be better for human race if you share your code with everybody so anyone can peek at it, detect and correct genetic bugs?... Of course anyone can fork your "code"
  and create a new distribution of "you" but if you are smart and with an above-the-average IQ, wouldn't it benefit the human race also? Or do you prefer for these scientists to debug and make copies of dumber people that volunteered to it leaving you as "closed source" in the human market?

And the final dilema...Should we clone Elvis?

Re:Think open source (0)

Anonymous Coward | more than 5 years ago | (#25548845)

And the final dilema...Should we clone Elvis?

Why Bother? Elvis is still alive. He actually presided over my wedding in Vegas.

Re:Think open source (0)

Anonymous Coward | more than 5 years ago | (#25549725)

It would be an interesting new perspective in the discussion of how much of human behavior / tendencies are learned versus inherent. Would Elvis's clone be just as talented, with the desire to become a musician?

Re:Think open source (1)

kre.86 (1213912) | more than 5 years ago | (#25550867)

Let me know if the cloning of Elvis is gonna go ahead McDonald's Corp. (2550707) On Oct 28: 56.62 $ ^4.86 (9.39%)

I'm excited (0)

Anonymous Coward | more than 5 years ago | (#25548635)

I'm a biosciences researcher and can't wait for the next couple years when I'll be able to sequence my own genome. With our current generation of high throughput sequencers, I'd estimate that it would cost around sixty or seventy thousand to sequence a single person. However the NIH goal is only $1000 a genome, and the crazy new technologies in the next generation sequencers look like they'll be able to do that. I know I'll be one of the fist to be sequenced. Although, I know I'll have many sleepless nights running myself through every database imaginable trying to predict diseases and when I'll get cancer.

Wait a tick... don't you remember this movie? (0)

Anonymous Coward | more than 5 years ago | (#25548717)

...GATTACA?

disappointing, some say (0)

Anonymous Coward | more than 5 years ago | (#25548827)

Note that the files that are available only contain "preliminary exon data". Large portions of the files are low-quality sequences with no real genetic information. See also this article, called "PGP sequence data disappointing":
http://scienceblogs.com/geneticfuture/2008/10/pgp_sequence_data_disappointin.php [scienceblogs.com]

Apparently, the files are in FASTQ format:
http://www.ira.cinvestav.mx:8080/bioperl/Bio/SeqIO/fastq.html [cinvestav.mx]

No problem here (4, Funny)

Trailer Trash (60756) | more than 5 years ago | (#25548975)

I have psoriasis - I've already donated tissue to a research tissue bank for that. I have no problems at all putting my history and genetic code out there for any researchers - it can only benefit me and my descendants.

Technically, it could also be used to create a clone army of me. But, we'd be pretty cool and probably not hurt anyone.

Who am I again? (0)

Anonymous Coward | more than 5 years ago | (#25549297)

Hmm. So I can submit a sample under an assumed name like Karl Marx or Barack Obama, get my results back, and possibly smear my victims in the process?

On the Internet no one knows you are a dog!

Correlations (0)

Anonymous Coward | more than 5 years ago | (#25549401)

I wonder, how long now before they're going to discover the nudist gene...

relax... (1)

aneamic (1116327) | more than 5 years ago | (#25549831)

Hell i'm putting my name down, i'm in the UK so its very likely i'll never hear anything of it. Lets be honest, slashdotters are a pretty paranoid group, I feel pretty safe in the knowledge that nobodys going to dedicate thousands of pounds to trying to frame me for some international jewel thievery. Also the site says there are three levels of anonymity possible, full disclosure, disclosure to vetted groups, and disclosure only to their parent company and affilated labs.

Ta30 (-1, Offtopic)

Anonymous Coward | more than 5 years ago | (#25550323)

LEA(VING CORE. i Channel, you might

copyright and privacy (1)

kubitus (927806) | more than 5 years ago | (#25552111)

every individual person shares 50% of its DNA with its father and 55% with its mother ( counting also mitochondrial DNA ) and percentages of 100% ( twins ) to sometimes 0% with siblings.

other relatives also share DNA with every individual person!

where these people asked by the contributors, if they are allowed to publish their genetic makeup? How is the legal situation?

Can these relatives sue somebody who published his DNA?

What about the DMCA?

James Watson has over 20 disease genes (1)

peter303 (12292) | more than 5 years ago | (#25555865)

A recent Nature article ran Watson's genome (3rd in world) against a 5000-gene disease database and found between 20 and 32 matches. Like one for retinitous pigmatosa. Yet none of these were expressed in his first 80 years of life. This shows how little we understand yet. Medical insurance companies should not jump the gun.

Depends... have I been drinking? (0)

Anonymous Coward | more than 5 years ago | (#25557683)

I think the turn out would be much better if we submitted our genome information after a few drinks... heck, I might even give you a few pics to show you what I am talking about in reference to my genetics.

My social security number is... (1)

Jizzbug (101250) | more than 5 years ago | (#25557815)

323-80-9292

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