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View Poll Results: Genetic Information Belongs To...
The individual and their descendants. It should be "copyrighted." 2 22.22%
Mankind. It should be freely disseminated as necessary scientific infrmation. 7 77.78%
I don't know, or I can't decide. Or I have a different view not expressed by the above options. 0 0%
Voters: 9. You may not vote on this poll

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Old 03-26-2013, 11:12 AM  
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Should Genetic Data Be "Copyrighted" By The Individual Or Their Descendants?

Scientists Published Henrietta Lacks’ Genome Without the Consent of Her Family



In 1951, Henrietta Lacks, a poor black mother of five living near Baltimore, died from cancer. But cells taken from her tumor lived on. The so-called HeLa cells multiplied prolifically and were sent to labs around the world, where they went on to help develop medical innovations and understanding about vaccines, cancer treatments, cloning and more.

Lacks’ story also raised significant questions about medical ethics. Lacks’ family was never informed that her cells lived on or even that a sample had been taken from her tumor. They only learned about the HeLa cells about twenty years later, by chance, and researchers used the family for HeLa studies without fully explaining what was going on.

In the story’s latest development, last week scientists published Lacks’ full genome—again, without consent of her family. Journalist Rebecca Skloot, who told the story of the HeLa cells in her best-selling book The Immortal Life of Henrietta Lacks, responds to this in an op-ed published in The New York Times:
Genetic information can be stigmatizing, and while it’s illegal for employers or health insurance providers to discriminate based on that information, this is not true for life insurance, disability coverage or long-term care.
Uploading a person’s genetic code onto the website SNPedia, for example, can reveal all sorts of personal information about her and her family within minutes, Skloot explains.
Scientifically speaking, that’s good news. There’s a lot of hope for using technology like this for affordable “personalized medicine.” But legally and ethically speaking, we’re not ready for it.
After hearing from the Lacks family, the European team apologized, revised the news release and quietly took the data off-line. (At least 15 people had already downloaded it.) They also pointed to other databases that had published portions of Henrietta Lacks’s genetic data (also without consent). They hope to talk with the Lacks family to determine how to handle the HeLa genome while working toward creating international standards for handling these issues.
As David Kroll points out in Forbes, legally the researchers who published the study were not required to consult with Lacks’ family. Laws requiring consent from offspring when a person or scientist chooses to publish their genome do not exist.
Both Skloot and Kroll call for a reinvention of current standard procedure governing such issues, specifically one that focuses more on consent and trust.

http://blogs.smithsonianmag.com/smar...henriettalacks
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Old 03-26-2013, 07:56 PM   #16
Brock Brock is offline
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Originally Posted by BucEyedPea View Post
It's still part of her body. We get to check off if we want to donate our bodies to science.
It was a part of her body. Then they took it out.
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Old 03-26-2013, 08:08 PM   #17
BucEyedPea BucEyedPea is offline
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It was a part of her body. Then they took it out.
No kiddin'!
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Old 03-26-2013, 08:15 PM   #18
Psyko Tek Psyko Tek is offline
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Originally Posted by cdcox View Post
The issue here is that genetic information about her, including medical info, would also be passed down to her decendents. So insurance companies and employers could use the info to discriminate against her decendents.

The problem is when the information is tied directly to an individual. These days there are laws and procedures that would prevent the two from being connected.
mine is that her name should not have been released
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Old 03-26-2013, 08:16 PM   #19
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Soon humanity will consist of huge herds of drooling morons watched over by just enough lawyers to keep them fed and tended.
soon?
do you get out much?
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Old 03-28-2013, 06:26 AM   #20
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I have an identical twin. We were once the same egg. But we are not the same person by a long shot. I figure there is a lot more that makes me an individual than just my genome.

My twin isn't me. He's also not my duplicate. He's just a guy who looks a lot like me.
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