Lucas123 writes "The Personal Genome Project, which opened itself up to the public on April 25, has to date signed up 13,000 of the target 100,000 volunteers needed to create the world's first publicly accessible genome database. Volunteers will go through a battery of written tests and then offer DNA samples from which their genetic code will be derived and then published to help scientists discover links between genes and hereditary traits. While the Personal Genome Project won't publish names, just about everything else will be made public, including photos and complete medical histories. Scientists hope to some day have millions of genomes in the database."
You know, we all thank you for your selfless efforts to personally finance the Purell and Kleenex industries. We applaud your heroic efforts, and call upon you to greater heights of achievement.
Just who is going to control these kinds of databases and prevent the misuse of the data? Once a condition or a hereditary pre-disposition is determined, a subject could be denied medical coverage for that condition. It may well be anonymous today, but that can not be guaranteed into the future.
'It may well be anonymous today, but that can not be guaranteed into the future.'
It's not that anonymous even today:
'While volunteers won't have their names published with their genomic information, Church said the subjects are completely aware that anyone familiar with them can deduct from the photos and background information who they are.'
Some early volunteers in the pilot program have gone even further than this, and explicitly linked their names to the public data.
Like it or not, keeping your DNA private is just about as difficult as keeping your face private. All it takes is a hair follicle or skin cell, and you leave a trail of those everywhere you go. I'm not saying it's a good thing, but there it is.
People, please realize this: Nearly all health problems are better prevented than fixed later. Most of the time it's way easier too. But species-appropriate food and sports are so uncool, right?
Just who is going to control these kinds of databases and prevent the misuse of the data?
Isn't that the exact opposite of the point?
That is, isn't the objective of this project to gather data from people who have given their informed consent to 'open-sourcing' their medical data, in order to free researchers from the burdens imposed by working with non-open-source data?
Once a condition or a hereditary pre-disposition is determined, a subject could be denied medical coverage for that condition. It may well be anonymous today, but that can not be guaranteed into the future.
This project isn't anonymous now, and doesn't claim to be! That's the point - genetic data with medical histories and photographs alongside.
If, in the future, medical insurers decide to discriminate based on genetic tests, they w
That's why the US has GINA [genome.gov] (Genetic Information Nondiscrimination Act (GINA) of 2008).
Whether it'll actually work is a separate issue. One of the points of this project is that trying to keep your genetic information private is a losing battle and that it might be better/neutral to just be open about it.
Besides, insurance companies have become experts at denying coverage. They are: 1. legally obligated not to discriminate based on genetic information, and 2. totally unhindered by that fact. Why would they bother to start trying to use genetics when they can pay a few doctors to write letters explaining why your requested procedure isn't medically necessary? It seems to work pretty well for them.
Once a condition or a hereditary pre-disposition is determined, a subject could be denied medical coverage for that condition.
I can't believe this could even be an issue. Why don't your lawmakers make it illegal for those responsible for financing medical care to discriminate against people with illnesses?
I can't believe this could even be an issue. Why don't your lawmakers make it illegal for those responsible for financing medical care to discriminate against people with illnesses?
Because at any given time, most voters either are, or think that they are, healthy; thus they're pretty receptive to arguments that eliminating pre-existing condition restrictions would raise their own costs. Basically, nobody who's healthy wants to pay for anybody else's healthcare.
Ever watch GATTACA? Think about what they coined "discrimination down to a science". Databases do not need your name to figure out majorities. If insurance companies linked a mole on the left cheekbone to a higher probability of cancer... well, maybe you'd just get the mole removed.
Nevertheless, I'm all for the advancement of science and am interested in contributing to the project. Who knows, maybe if all the pessimists advance the project, it'll be done properly.
Why don't you just scrap insurance companies and just create a public, universal health care service like the rest of the developed world? That way, they can't deny treatment.
Good point. However, if they are not asking you for information that can be used to link directly back to you, then the database is waste of time. What will stop the mis-creants from stuffing junk into the data points? What will prevent someone with a low priority condition, to submit as multiple people in an attempt to up the priority of their condition.
What will prevent someone with a low priority condition, to submit as multiple people in an attempt to up the priority of their condition.
If there are only 10s of thousands of samples, it shouldn't be too tough to notice if there just happen to be a dozen people with identical genomes. That said, the techniques here are young enough that identifying sequences for anything we can seems worth-while - From heart disease to freckles. So what if a rare, 'low-priority' condition gets identified?
Luckily, nobody else out there would have access to your medical history and a strong financial interest in knowing what your genome contains. Definitely not an insurance company or anything. And identifying somebody with date of birth, blood type, family history, several facial photos, and a bunch of other information is certainly beyond the powers of science...
Do they have something on the web site about this?
My reaction when I read the story was (a) Wow, I really want to do this, and (b) what if I'm denied coverage at some point down the road because of it?
As soon as I'm really confident that I won't get burned, I'm in.
To their credit, the participation page [personalgenomes.org] is reasonably forthright about what will be disclosed, and I'm sure that if you dig a few links deeper, you'll find more. If you really want the gory details, I'm sure that the IRB has a thick pile of documents somewhere.
Nothing they say, though, suggests any comfort with respect to denied coverage. They can't protect you and it isn't their problem. I'm predicting that the volunteer rolls will be heavy on a) wealthy futurists/futurist-wannabes, b)young techy futuri
what if I'm denied coverage at some point down the road because of it?
It's only a matter of time.
Modern insurance policies can deny you coverage due to a pre-existing condition. It won't be long before we're able to identify all kinds of disorders and diseases with a simple genetic screening. Then we just call having a 90% chance to develop cancer a pre-existing condition, and you're screwed.
It won't be long before we're able to identify all kinds of disorders and diseases with a simple genetic screening. Then we just call having a 90% chance to develop cancer a pre-existing condition, and you're screwed.
"The law does not cover life insurance, disability insurance and long-term care insurance." And, if that is the website one liner, I'm guessing that there might be a few other little areas of wiggle room. You can generally find a reason.
As for lethal genes, people don't have many that kick in before/during reproductive maturity. You then have another 30-45 years that you might like to live; but for which selective pressures have historically been a good deal weaker.
I don't think they'd pull the "chance of getting cancer card," nor would they need to with all the real genetic disorders [wikipedia.org] out there. In fact, I'd wager heavily that *everyone* has a genetic disorder of some kind, even the disorder itself hasn't been identified yet. Put another way, nobody's perfect.
While the Personal Genome Project won't publish names, just about everything else will be made public [...]
Why do we need the names? Just take the genome data and use it to concoct an unholy abomination, mocking the laws of God and man, making a soulless clone of the person in question, rousing the populace to chase you down with torches and pitchforks in an attempt to stop pure genius their pitifully small minds could never truly understand, and just ASK what his/her name is?
... the make-up of J Craig Venter's genome, as he used himself for human DNA in the first draft. It doesn't seem to have hurt him too much to have that information out.
Although indeed if the US would at least catch up to 1960's era Europe and institute universal single-payer health care, I would be much quicker to volunteer for this. Unfortunately as others have pointed out there is abundant opportunity for our for-profit insurance companies to abuse this information to make our lives more difficult (an
Good job of not reading my post. I guess that is why you posted AC, because you didn't want anything resembling a name to be associated with your paranoia and spin.
For starters, I already stated that
insurance companies
Need to disappear. The idiotic for-profit megabuck healthcare system we have in the US is not ethical or sustainable. We can learn from what other countries have been doing for 50 years and implement single-payer, universal health care; and then the worries about genetic-based health care fee structure di
The discoverer of the structure of DNA was the 3rd person fully sequenced. 20 of his genes appear in the bad gene database (@5000 entries). None of these have been expressed yet at his ripe old age of 80+.
Sergey Brin is worries about finding a Parkison's gene in his genome. But he doesnt need to be overly worried.
"The" discoverer of the structure of DNA was a group of seven people three of whom won a Nobel prize for it.. Watson, Crick, Wilkins, Stokes,Wilson, Franklin and Gosling
Rosalind Franklin died of Cancer before she could be nominated for the Nobel prize...
And in other news, Apple and others are mainstreaming the use of software to recognize faces, so the omission of names from the database is really a laughable gesture towards privacy. These folks are taking a risk, for sure. But hey, no risk, no rewards. I applaud them.
How many people must be sequenced until there is enough genetic coverage to interpolate?
I mean, I have a certain genetic code, and I share a good deal of that genetic code with my mother and father, right? And my siblings and I have similarities as well, I assume.
Using similar methods to those that we use for DNA testing of maternity or paternity, how many people in a given group must have their genes sequenced before you could, say, have a 50% chance of getting a match on a given bloodstain or fingernail a
I've never had such conflicting diametrically-opposed thoughts then that I fully agree with the project, and think of how many great things this project has the potential to produce.
Possibly a cure for cancer.
Perhaps a flawless man-machine interface
(Recursion alert) A flawless man-machine interface and the potentials for both extreme good and extreme evil. But in that case, for a certain percentage of these people, there may be generations of my descendants cursing my act. With a perfect man-machine interfa
So let's get rid of insurance companies and start insuring everyone?
I know I know that is like a whole other can of worm, but while this (slashdot) is a US based website, personal genome project is a world wide project, and large majority of the world doesn't have insurance or preconsidition problem.
Why keep pointing this issue out when it fairly localized? I am a canadian, and I will be fairly happy if they know more about how to treat me.
Although I love GATTACA, that film had a faulty reasoning.
Assuming a science so advanced people could be programmed from conception to have six fingers and become superb pianists, the same technology level would allow people to correct their genetic shortcomings. For instance, we already have Lasik to correct imperfect eyesight such as the protagonist in the film had.
Technology works both ways, if it's so advanced it lets someone find genetic "imperfections" it can also be used to mask them.
No, I think their reasoning is perfectly sound. In the movie, there are those who choose not to undergo genetic modification for their child, and have it born as is. There's also the corporate slant; All this modification costs. How much? As much as people can afford (c.f. the US education system). The thing that then differentiates people is the extent of their modifications, and the efficacy of them. The complete set of high flying mods would cost more than most could afford. The middling mods would b
I once put my genome online (Score:4, Funny)
I was surfing The Hun and accidentally put some of my genome on my keyboard.
Thank goodness for Purell and Kleenex.
Re: (Score:2, Funny)
You know, we all thank you for your selfless efforts to personally finance the Purell and Kleenex industries. We applaud your heroic efforts, and call upon you to greater heights of achievement.
Genome? (Score:5, Funny)
bit late (Score:5, Funny)
its a bit late,
google images already says there are 286,000 pictures of gnomes already online.
http://images.google.co.uk/images?q=garden%20gnome [google.co.uk] Results 1 - 20 of about 286,000
Re:bit late (Score:4, Funny)
I decided to verify your research.
OH MY GOD THEY'RE MULTIPL-*CONNECTION LOST*
Parent
Re: (Score:3, Funny)
I decided to verify your research.
OH MY GOD THEY'RE MULTIPL-*CONNECTION LOST*
I decided to verify as well and concur with your findings. 298,000 images of gnomes.
I also found that turning off the "safe search" feature resulted in a total of 305,000 images being found.
Can someone please tell me how I can get only those 7,000 additional images?!
Data Control (Score:5, Insightful)
Just who is going to control these kinds of databases and prevent the misuse of the data? Once a condition or a hereditary pre-disposition is determined, a subject could be denied medical coverage for that condition. It may well be anonymous today, but that can not be guaranteed into the future.
Anonymous Shnonymous (Score:3, Interesting)
Putting your genetic composition online is pretty much uhm... identifying yourself.
Given a name and an entire frickin gene sequence... I'd more quickly rely on the latter for identifying an individual.
Who knows... maybe at some point there will be software that can generate a speculative image of a person baed on the data in genes.
Re:Data Control (Score:5, Informative)
'It may well be anonymous today, but that can not be guaranteed into the future.'
It's not that anonymous even today:
'While volunteers won't have their names published with their genomic information, Church said the subjects are completely aware that anyone familiar with them can deduct from the photos and background information who they are.'
Some early volunteers in the pilot program have gone even further than this, and explicitly linked their names to the public data.
Parent
Re:Data Control (Score:5, Insightful)
Parent
Chicken or egg? (Score:2)
Without gathering a significant number of genomes, how could anyone identify which illnesses are hereditary, much less try to find a cure?
I'm willing to bet that in the next 30 years we will have "personal drugs" tailored to a specific genome made by a desktop machine.
Re: (Score:2)
Eat healthy, stay fit, die anyway.
Re: (Score:2, Insightful)
Just who is going to control these kinds of databases and prevent the misuse of the data?
Isn't that the exact opposite of the point?
That is, isn't the objective of this project to gather data from people who have given their informed consent to 'open-sourcing' their medical data, in order to free researchers from the burdens imposed by working with non-open-source data?
Once a condition or a hereditary pre-disposition is determined, a subject could be denied medical coverage for that condition. It may well be anonymous today, but that can not be guaranteed into the future.
This project isn't anonymous now, and doesn't claim to be! That's the point - genetic data with medical histories and photographs alongside.
If, in the future, medical insurers decide to discriminate based on genetic tests, they w
Re:Data Control (Score:5, Informative)
That's why the US has GINA [genome.gov] (Genetic Information Nondiscrimination Act (GINA) of 2008).
Whether it'll actually work is a separate issue. One of the points of this project is that trying to keep your genetic information private is a losing battle and that it might be better/neutral to just be open about it.
Parent
Re: (Score:2)
Besides, insurance companies have become experts at denying coverage. They are: 1. legally obligated not to discriminate based on genetic information, and 2. totally unhindered by that fact. Why would they bother to start trying to use genetics when they can pay a few doctors to write letters explaining why your requested procedure isn't medically necessary? It seems to work pretty well for them.
Re: (Score:2)
Once a condition or a hereditary pre-disposition is determined, a subject could be denied medical coverage for that condition.
I can't believe this could even be an issue. Why don't your lawmakers make it illegal for those responsible for financing medical care to discriminate against people with illnesses?
Re: (Score:2)
I can't believe this could even be an issue. Why don't your lawmakers make it illegal for those responsible for financing medical care to discriminate against people with illnesses?
Because at any given time, most voters either are, or think that they are, healthy; thus they're pretty receptive to arguments that eliminating pre-existing condition restrictions would raise their own costs. Basically, nobody who's healthy wants to pay for anybody else's healthcare.
Of course, when those people get sick it's a d
Re:Data Control (Score:4, Interesting)
Nevertheless, I'm all for the advancement of science and am interested in contributing to the project. Who knows, maybe if all the pessimists advance the project, it'll be done properly.
Parent
Re:Data Control (Score:5, Insightful)
Parent
Re: (Score:2)
You can just claim it's your identical twin!
Re:Data Control (Score:5, Interesting)
Good point. However, if they are not asking you for information that can be used to link directly back to you, then the database is waste of time. What will stop the mis-creants from stuffing junk into the data points? What will prevent someone with a low priority condition, to submit as multiple people in an attempt to up the priority of their condition.
Parent
Re: (Score:3, Insightful)
What will prevent someone with a low priority condition, to submit as multiple people in an attempt to up the priority of their condition.
If there are only 10s of thousands of samples, it shouldn't be too tough to notice if there just happen to be a dozen people with identical genomes. That said, the techniques here are young enough that identifying sequences for anything we can seems worth-while - From heart disease to freckles. So what if a rare, 'low-priority' condition gets identified?
Re:Data Control (Score:5, Insightful)
Definitely not a problem.
Parent
Re: (Score:3, Interesting)
Do they have something on the web site about this?
My reaction when I read the story was (a) Wow, I really want to do this, and (b) what if I'm denied coverage at some point down the road because of it?
As soon as I'm really confident that I won't get burned, I'm in.
Re: (Score:3, Insightful)
Nothing they say, though, suggests any comfort with respect to denied coverage. They can't protect you and it isn't their problem. I'm predicting that the volunteer rolls will be heavy on a) wealthy futurists/futurist-wannabes, b)young techy futuri
Re:Data Control (Score:4, Interesting)
what if I'm denied coverage at some point down the road because of it?
It's only a matter of time.
Modern insurance policies can deny you coverage due to a pre-existing condition. It won't be long before we're able to identify all kinds of disorders and diseases with a simple genetic screening. Then we just call having a 90% chance to develop cancer a pre-existing condition, and you're screwed.
It is going to happen.
Parent
Re: (Score:2)
There is a law against that [genome.gov] that just went into effect.
Also, people don't actually have that many lethal genes. There's the whole natural selection thing going on.
Re: (Score:3, Interesting)
As for lethal genes, people don't have many that kick in before/during reproductive maturity. You then have another 30-45 years that you might like to live; but for which selective pressures have historically been a good deal weaker.
Re: (Score:2)
I don't think they'd pull the "chance of getting cancer card," nor would they need to with all the real genetic disorders [wikipedia.org] out there. In fact, I'd wager heavily that *everyone* has a genetic disorder of some kind, even the disorder itself hasn't been identified yet. Put another way, nobody's perfect.
I for one! (Score:2, Funny)
Am I the only one who read: 13,000 Volunteer To Put Personal Gnomes Online ??
Imagine an army of garden gnomes.. Well, I for one! Oh, forget it.
Re: (Score:2, Funny)
Open Source People! (Score:2)
It's quite the logical extension of the project after all! Finally we can have a REAL gnome interface!
Re: (Score:2)
Given enough genomes, all people are shallow.
The genome is out there (Score:2)
Names not needed (Score:3, Funny)
While the Personal Genome Project won't publish names, just about everything else will be made public [...]
Why do we need the names? Just take the genome data and use it to concoct an unholy abomination, mocking the laws of God and man, making a soulless clone of the person in question, rousing the populace to chase you down with torches and pitchforks in an attempt to stop pure genius their pitifully small minds could never truly understand, and just ASK what his/her name is?
We alredy know.. (Score:2)
Although indeed if the US would at least catch up to 1960's era Europe and institute universal single-payer health care, I would be much quicker to volunteer for this. Unfortunately as others have pointed out there is abundant opportunity for our for-profit insurance companies to abuse this information to make our lives more difficult (an
Re: (Score:2)
For starters, I already stated that
insurance companies
Need to disappear. The idiotic for-profit megabuck healthcare system we have in the US is not ethical or sustainable. We can learn from what other countries have been doing for 50 years and implement single-payer, universal health care; and then the worries about genetic-based health care fee structure di
James Watson had 20 bad genes (Score:2)
Sergey Brin is worries about finding a Parkison's gene in his genome. But he doesnt need to be overly worried.
Re: (Score:2)
Re: (Score:3, Interesting)
"The" discoverer of the structure of DNA was a group of seven people three of whom won a Nobel prize for it .. Watson, Crick, Wilkins, Stokes ,Wilson, Franklin and Gosling
Rosalind Franklin died of Cancer before she could be nominated for the Nobel prize ...
Facial recognition (Score:3, Interesting)
One byte for base pair (Score:2)
TFA states they need one byte per base pair resulting in 6 gigabytes per subject.
My guess is there is a huge sequences of duplicates so compressions could probably bring this number down quite a bit.
Also, since a byte can store 256 distinct values would it be able to handle more then just one base pair.
Plural? (Score:2)
Re: (Score:2, Informative)
Isn't the plural of "volunteer", "volunteers"?
For the noun, yes. For the verb, no.
Question for the geneticists (Score:2)
How many people must be sequenced until there is enough genetic coverage to interpolate?
I mean, I have a certain genetic code, and I share a good deal of that genetic code with my mother and father, right? And my siblings and I have similarities as well, I assume.
Using similar methods to those that we use for DNA testing of maternity or paternity, how many people in a given group must have their genes sequenced before you could, say, have a 50% chance of getting a match on a given bloodstain or fingernail a
What a hard question! (Score:2)
I've never had such conflicting diametrically-opposed thoughts then that I fully agree with the project, and think of how many great things this project has the potential to produce.
Possibly a cure for cancer.
Perhaps a flawless man-machine interface
(Recursion alert) A flawless man-machine interface and the potentials for both extreme good and extreme evil. But in that case, for a certain percentage of these people, there may be generations of my descendants cursing my act. With a perfect man-machine interfa
Re: (Score:3, Insightful)
Great film, wrong conclusions (Score:2)
Although I love GATTACA, that film had a faulty reasoning.
Assuming a science so advanced people could be programmed from conception to have six fingers and become superb pianists, the same technology level would allow people to correct their genetic shortcomings. For instance, we already have Lasik to correct imperfect eyesight such as the protagonist in the film had.
Technology works both ways, if it's so advanced it lets someone find genetic "imperfections" it can also be used to mask them.
Re: (Score:2)
Technology works both ways, if it's so advanced it lets someone find genetic "imperfections" it can also be used to mask them.
Necessity is the mother of invention.
If almost no one had bad eye sight, we'd never have invented Lasik.
If we identify and eliminate all of the "bad heart" genes, we might never figure out how to make artificial hearts.
Re: (Score:3, Interesting)
No, I think their reasoning is perfectly sound.
In the movie, there are those who choose not to undergo genetic modification for their child, and have it born as is.
There's also the corporate slant; All this modification costs. How much? As much as people can afford (c.f. the US education system). The thing that then differentiates people is the extent of their modifications, and the efficacy of them. The complete set of high flying mods would cost more than most could afford. The middling mods would b