The Personal Genome Project Hits the Web

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?"

Comments

Whoa... for a sec i thought i saw...

[davidsyes]

Persona GNOME Project...

Re:Whoa... for a sec i thought i saw...

[X0563511]

Learn to read then.

Privacy

[internerdj]

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.

Come again?

[Aphoxema]

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?

[davester666]

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?

[davester666]

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?

[evilNomad]

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..

Somebody should make this into a simulation

[TheModelEskimo]

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

[Ethanol-fueled]

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.

your name

[forceofyoda]

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 already have way more information about me than I expected.

Personalized advertising based on your genome...

[Quantos]

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

the issue is not one of privacy

[circletimessquare]

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

Re:the issue is not one of privacy

[TubeSteak]

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

[khallow]

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.

No Worries

[ParanoiaBOTS]

I am protected by Lifelock, so my information can't be stolen right?

Think open source

[chord.wav]

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?

No problem here

[Trailer Trash]

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.

What privacy?

[denzacar]

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.