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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."
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.
As long as they didn't put information about the person who the DNA came from up on the internet (name, contact information, etc), and didn't give that information out to anyone, I don't see a problem with it. (TFA didn't have any details about this) Without said information, all that anyone would be able to tell when they match the DNA is that "Oh, this person volunteered for this experiment."
That being said though, I'm sure the government(s) would find ways to force this information out of them if needed in some unconstitutional way, so I donno....
"Intelligence has nothing to do with politics!"
-Londo Mollari
The threat of publicly-available genetic profiles is that insurers will use them to increase premiums or deny coverage to people with markers for certain diseases or vulnerabilities.
If only ten people's DNA information is available, that will not make a difference in the bottom line. Ten thousand people is worth study. Ten million people, now we're talking serious bottom-line savings by eliminating all that sickly deadwood!
And that's before getting into the possibility of cooking up some random person's DNA on the fly to use as planted evidence...
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
intellectual property law is philosophically incoherent. it is your moral duty to ignore it or sabotage it
This is a Your Rights Online issue? I'm not going to argue that there are no privacy issues with personal genetics (there obviously are), but framing this article in this way *totally* misses the point of the Personal Genome Project.
Actually, what's going on is that with the aid of new sequencing technologies and LOTS of bitchin' huge computers, we're entering an age where we can take on sequencing multiple individuals with the goal of furthering scientific exploration and medical knowledge.
If the only way you can see that is as a violation of your privacy (and it's not yours, by the way, but the people who volunteered for the study), then you are severely lacking in imagination, scientific curiosity, or just another Luddite howling "wolf" at every mention of human genetics.
I am not at all shocked - I am sure I have left genetic material over more than one continent - if someone wanted to sequence my DNA and post it on the Internet - HAVE FUN !!!!
What is private for someone may not necessarily be for someone else. As long as they were the one making the decision while hopefully knowing the consequences, there is nothing wrong.
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.
I don't believe in time. It's a grand conspiracy designed to sell watches.
I agree with parent poster that surely one's own privacy is something one can decide for oneself to flout.
But: one shares 50% of ones DNA with siblings, parents, and children, making such a decision forcibly reveal their DNA as well. Perhaps Pinker et al. did consult their closest relatives, but as a general principle I think that individual DNA should never be publicly available.
When population genomics company DeCode wanted to create a large research database of Icelandic DNA, this was one of the problems they faced.
d.
It is one thing to release your genome sequence when you are wealthy and have tenure at Harvard. It is quite another thing to do this an ordinary citizen who might want to change jobs and is not in a position to personally endow their child's health care. At the moment medical genetics is much better at diagnosing conditions than it is at offering cures for those conditions. We are making progress in guaranteeing rights against discrimination on the basis of genetics, but we have a long way to go.
Statesman
...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.
"You're right," Fisheye says. "I should have set it on 'whip' or 'chop.'"