Scientists To Post Individuals' DNA Sequences To Web

isBandGeek() writes "With shocking disregard to their personal privacy, at least 10 people volunteered to release their entire medical records and DNA sequences in order to get their DNA decoded and analyzed. 'They include Steven Pinker, the prominent Harvard University psychologist and author, Esther Dyson, a trainee astronaut and Misha Angrist, an assistant professor at Duke University. They have each donated a piece of skin to the project at Harvard University and agreed to have the results posted on the internet. The three are among the first 10 volunteers in the Personal Genome Project, a study at Harvard University Medical School aimed at challenging the conventional wisdom that the secrets of our genes are best kept to ourselves. The goal of the project is to speed medical research by dispensing with the elaborate precautions traditionally taken to protect the privacy of human subjects."

Comments

I'd do this in a second

[moderatorrater]

Shocking disregard for personal privacy? Nobody can do more than glean a few random statistical probabilities from DNA as it stands now. It may be that in ten years we'll know more, but if our knowledge of DNA goes at the same pace that it did for the last ten years, it'll be half a century before we're able to tell enough about a person that it could be considered an invasion of privacy.

If this will really help the science move forward more quickly, then the benefits of everyone not knowing my DNA will easily be offset by the new scientific knowledge.

Re:I'd do this in a second

[Anonymous Coward]

Nobody can do more than glean a few random statistical probabilities from DNA as it stands now.

And yet in the swirling mists of half-truths and the unknown, people act the craziest.

I'm sure that the 8th volunteer (who has the marker for "10% risk of cancer") will be grateful after a decade of being uninsurable when the scientists go "oh wait, that should be 0.01%"

Re:I'd do this in a second

[Xaria]

Worst-case scenario, they can move to a country that actually cares about its citizens and provides decent free health care. And if they're not planning to commit a crime then they probably don't care about being on a DNA database.

Let's get over the paranoia, people ... the amount of data your average kid puts on Facebook is enough to impersonate them.

Re:I'd do this in a second

[mollymoo]

I'm sure that the 8th volunteer (who has the marker for "10% risk of cancer") will be grateful after a decade of being uninsurable when the scientists go "oh wait, that should be 0.01%"

If people are being denied medical care because they release information about their health the problem lies not with the person releasing their information, but with the society in which they live.

Re:I'd do this in a second

[philspear]

Well, that will give them moral superiority as they declare bankrupcy following a life-saving emergency surgery.

"I may live in a box, but it's cause the system is broken, not my fault."

Re:I'd do this in a second

[mollymoo]

The scarcity business doesn't apply, every Western economy can afford universal medical care.

Re:I'd do this in a second

[aztektum]

You're right, the system we have now, where people go bankrupt trying to save their lives or the lives of a loved one is *so* much better.

What's funny and sad at the same time is we'll bankrupt the nation to support a war and help out big business... but providing health services would somehow be a big no no.

Re:I'd do this in a second

[drinkypoo]

The idea is that that you give the two pills to the guys who only need one pill each, because then you have two healthy people rather than one.

Cubans spend what, $35/year on average on medical care, yet have the same life expectancy and about the same infant mortality rate we do? Yet we can easily spend more than $35 on a single pill, even with prescription coverage...

I think it should be obvious to anyone that the system is the problem. In fact, resources are not scarce. All scarcity in a market based on artificial chemicals is itself artificial. It's like saying there's a shortage of Freon because we can't make it fast enough. No, it's just now illegal to make in the USA - but you can still sell it.

Re:I'd do this in a second

[GauteL]

"A country that cares about its citizens doesn't try to take over the health care industry, it allows people to get the amount or level of insurance they want and don't overload the system by making it free for all. Free for all means mediocre or poor for everyone."

Could you please provide some evidence for this statement? Free healthcare is provided in almost the entire Europe and Canada.

Yes, sometimes we have waiting lists for non life threatening operations. People sometimes rightfully complain about things and many things could be improved.

However, not once have I heard anyone seriously suggesting we get rid of nationalised health care. Why? Because health care is generally good, we all know we will be cared for regardless of our current financial status and because nationalised health care saves lives.

Contrary to what you might think, Doctors in the UK (and Norway) tend to like the nationalised health care, despite the fact that they could earn loads more in a privatised system. Why? Because they feel it is morally right and because they know they will never have to turn someone away simply because they don't have money or insurance.

This fantasy world many americans live in with regards to 'socialised medicine' is baffling at times.

Re:I'd do this in a second

[guruevi]

Is that why I pay so much for healthcare? I pay more per month for health care than I probably use in a year... just in case. This is supposed to be a pooled resource so that people that are less fortunate health-wise can afford to get healthcare. There are hundreds of people like me, only a few like them. Of course insurance companies would like to weed out 'them' from their policies so they don't have to pay out but that's not because of scarce resources (nowhere in the world is there scarcity of any resource, only artificial scarcity by either societies, corporations or governments) it's because of pure greed and profit. Insurance companies should be not-for-profit organizations, only making enough money to cover their expenses and a pool of money that's invested in something with steady returns for pay outs. The fact that insurance companies are listed in stock markets is bad enough.

genetic exhibitionists

[circletimessquare]

exhibitionists are those who flaunt in public happily that which conventional wisdom has decided should be kept private. usually not for a better intellectual or moral reason, mainly just because of ego. mostly harmless

Re:Coming from someone who cares about security

[dex22]

This is not necessarily true. The UK DNA database allows the police to make educated guesses about the last name of the originator of a DNA sample, as your father often will have the surname name as you. Is it a stretch that with a possible name, race, and good probabilities of the contents of their medical records, it only takes a small push to get laws passed making this information part of the Government-accessible domain?

Whatever

[guyminuslife]

Subby: Don't do that! You're violating your own privacy!
Volunteer: I'm doing this for the benefit of science.
Subby: Yes, but then...people can look up your DNA and medical records!
Volunteer: Uh. That's the point.
Subby: But people can see them!
Volunteer: Yes. I understand that. I am. Voluntarily. Releasing. My. Own. Records.
Subby: But bad stuff could happen!
Volunteer: Probably not. But I'm okay if it does. The overall benefits outweigh the personal risk.
Subby: But that's....bad!
Volunteer: Why?
Subby puts on tin-foil hat.

It's okay, children

[drinkypoo]

...it's okay to mark me troll when I threaten your assumptions. But I sure do wish you'd drop me a line in my journal and let me know who you are so I can foe you, so I never have to read your comments.