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."

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

[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

[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: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.

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

[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

[fuzzyfuzzyfungus]

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 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.