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

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?

[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..

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

[X0563511]

Learn to read then.

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.

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.

No Worries

[ParanoiaBOTS]

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

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.

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.