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?"
Persona GNOME Project...
Previously: "Linux... Toward the Sunrise..." Now: "Linux... Toward the-- No, now, part of Every Sunrise"
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.
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.
"Most people, I think, don't even know what a rootkit is, so why should they care about it?"
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.
I have nothing to hide and believe in personal transparency at all times, in all things.
http://yro.slashdot.org/yro/08/10/20/204216.shtml
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.
That could be good or bad. I wouldn't keep getting spam about Male Enhancement, but they would pepper me for online gambling.
Some people are only alive because it's against the law for me to hunt them down and kill them.
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
intellectual property law is philosophically incoherent. it is your moral duty to ignore it or sabotage it
I am protected by Lifelock, so my information can't be stolen right?
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.
WhyTF would I share it? Do I gain anything, or I just play in the game laid out by others?
I'll be happy to donate some of my 'genetic information' to any female 'researcher' who wants it
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?
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?
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.
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?
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.
...GATTACA?
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
Apparently, the files are in FASTQ format:
http://www.ira.cinvestav.mx:8080/bioperl/Bio/SeqIO/fastq.html
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.
Do you have ESP?
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!
I wonder, how long now before they're going to discover the nudist gene...
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.
Mit der Dummheit kämpfen Götter selbst vergebens
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.
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!
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?
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/ )
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.
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.
323-80-9292
-=/\- Jizzbug -/\=-