The Personal Genome Project Hits the Web 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?"
Whoa... for a sec i thought i saw... (Score:3, Funny)
Persona GNOME Project...
Re:Whoa... for a sec i thought i saw... (Score:5, Funny)
Learn to read then.
Re: (Score:1)
Privacy (Score:5, Insightful)
Re: (Score:2)
Or employers, or banks...
Re: (Score:2)
Go watch GATTACA.
The explains why you should not allow anyone to see your genetic code.
Re: (Score:1)
What privacy? (Score:3, Interesting)
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 pri
Re: Insurance companies (Score:1)
Re: (Score:2)
Re: (Score:2)
Come again? (Score:5, Insightful)
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? (Score:4, Insightful)
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: (Score:1, Insightful)
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 slig
Re: (Score:3, Interesting)
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
Re: (Score:1)
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
Re: (Score:1)
Re: (Score:2)
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? (Score:4, Interesting)
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: (Score:2)
Re: (Score:1)
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: (Score:2)
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 b
Re: (Score:1)
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 ca
Re: (Score:2)
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, Denmar
Re: (Score:2)
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: (Score:2)
From the website: Even though participants can enroll at no cost, we encourage donations.
Re: (Score:2)
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: (Score:2)
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: (Score:1)
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
Re: (Score:2)
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 s
Re: (Score:2)
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 dat
Re: (Score:2)
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: (Score:2)
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 i
Re: (Score:2)
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.
Somebody should make this into a simulation (Score:5, Funny)
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: (Score:3, Interesting)
Re: (Score:1, Funny)
Re: (Score:1)
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: (Score:2)
Lazarus, is that you?
your name (Score:4, Insightful)
Then again, sites like peekyou [peekyou.com] already have way more information about me than I expected.
Re: (Score:1)
Re: (Score:2)
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... (Score:2, Funny)
the issue is not one of privacy (Score:4, Insightful)
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 (Score:2)
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 (Score:5, Insightful)
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: (Score:1)
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 jus
Re: (Score:2)
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
Re: (Score:3, Interesting)
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
Re: (Score:2)
How does it affect you? Immensely.
No Worries (Score:5, Funny)
It can hard to tell who is who (Score:2)
Wait, wait, wait.. (Score:1)
Re: (Score:2)
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 (Score:5, Insightful)
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: (Score:1)
No problem here (Score:5, Funny)
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.
relax... (Score:1)
copyright and privacy (Score:1)
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 (Score:2)