13,000 Volunteer To Put Personal Genomes Online

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."

Comments

I once put my genome online

[BadAnalogyGuy]

I was surfing The Hun and accidentally put some of my genome on my keyboard.

Thank goodness for Purell and Kleenex.

Re:I once put my genome online

[rcamans]

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?

[Norsefire]

Is there a similar project for KayDE?

bit late

[LiquidCoooled]

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 Results 1 - 20 of about 286,000

Re:bit late

[castorvx]

... Results 1 - 20 of about 286,000

I decided to verify your research.

Results 1 - 20 of about 298,000

OH MY GOD THEY'RE MULTIPL-*CONNECTION LOST*

Re:bit late

[STFS]

I decided to verify your research.

Results 1 - 20 of about 298,000

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

[macbeth66]

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.

Re:Data Control

[spydabyte]

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.

Re:Data Control

[macbeth66]

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.

Re:Data Control

[fuzzyfuzzyfungus]

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...

Definitely not a problem.

Re:Data Control

[RDW]

'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.

Re:Data Control

[Anonymous Coward]

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 won't just do it for the 13,000 people in this database; they'll require testing for every person applying for insurance. And if that happens, we can legislate against it - if we as a society want to.

Re:Data Control

[timeOday]

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.

Re:Data Control

[Autumnmist]

That's why the US has GINA (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.

Re:Data Control

[gnick]

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

[astrashe]

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:Data Control

[fuzzyfuzzyfungus]

To their credit, the participation page 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 futurist types who still feel immortal, and c) European socialist communists who don't have to worry about it.

Re:Data Control

[daem0n1x]

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.

Re:Data Control

[Ephemeriis]

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.

Re:Data Control

[fuzzyfuzzyfungus]

"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 for one!

[Sigg3.net]

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:I for one!

[ashtophoenix]

I knew this would happen from the start of this Personal Gnome Thing.

Anonymous Shnonymous

[dmomo]

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:And your "DNA Score" is next.

[ID000001]

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.

Names not needed

[Captain Spam]

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?

Facial recognition

[wealthychef]

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.

Re:James Watson had 20 bad genes

[JasterBobaMereel]

"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 ...

Re:Plural?

[maxwell demon]

Isn't the plural of "volunteer", "volunteers"?

For the noun, yes. For the verb, no.

Re:Great film, wrong conclusions

[malkavian]

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 be aimed at the general populace, and the basic would be aimed at the 'budget' market. Probably just enough to get rid of the susceptability to cancer, heart defects etc. Nothing to add brain/muscle/lifespan.
Seeing as there's a resource, and only so many places that'll be licensed, you really think they'll give it all away for free?