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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%
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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, 11:36 AM   #2
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Completely stupid. Copyrighting your genome is ridiculous.
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High Tech is Sorcery and the people who are really powerful are literally telling people to commit crimes using the psychic interspace created by the WWW and Wireless. They are controlling peoples actions like drones . The two things are deeply intertwined. The more man's brain interfaces with machines the creepier it gets. They use brains separate from a human body in a supercomputer and you have The Image of the Beast. The military has been doing this since the 50s
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Old 03-26-2013, 11:46 AM   #3
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Old 03-26-2013, 11:55 AM   #4
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Originally Posted by Dave Lane View Post
Completely stupid. Copyrighting your genome is ridiculous.
That was my reaction as well. I was hoping that someone with a different opinion would chime in.
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Old 03-26-2013, 12:04 PM   #5
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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.
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Old 03-26-2013, 12:05 PM   #6
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I don't support © on this either but she should have been informed and given the choice. Also there are privacy concerns. FSU made this woman's situation a required book to be read and one of the descendants spoke at the start of the school year. Another victim story.
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Old 03-26-2013, 12:12 PM   #7
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Old 03-26-2013, 02:00 PM   #8
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Quote:
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.
Sure her name should be shielded.
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High Tech is Sorcery and the people who are really powerful are literally telling people to commit crimes using the psychic interspace created by the WWW and Wireless. They are controlling peoples actions like drones . The two things are deeply intertwined. The more man's brain interfaces with machines the creepier it gets. They use brains separate from a human body in a supercomputer and you have The Image of the Beast. The military has been doing this since the 50s
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Old 03-26-2013, 02:04 PM   #9
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I think a person should "own" the rights to their genetic info until X years after death. (not sure what the X should be, probably 10-20 years) After that it should become public domain with certain protections for the privacy of descendants.
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Old 03-26-2013, 02:15 PM   #10
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Old 03-26-2013, 02:17 PM   #11
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This seems much more of an ethics issue than a copyright issue. I'd support some privacy restrictions, and restrictions on discrimination based on the data. But no, you can't protect nature.
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Old 03-26-2013, 03:29 PM   #12
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This seems much more of an ethics issue than a copyright issue. I'd support some privacy restrictions, and restrictions on discrimination based on the data. But no, you can't protect nature.
I used the term "copyrighted" for brevity. I meant should a person have ownership and control of their genetic information, should it be treated by law in a way similar to the way that we treat intellectual property.
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Old 03-26-2013, 03:41 PM   #13
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Originally Posted by listopencil View Post
I used the term "copyrighted" for brevity. I meant should a person have ownership and control of their genetic information, should it be treated by law in a way similar to the way that we treat intellectual property.
There's a fine line. I'd support privacy restrictions on the use and publication without consent. But I'd have to see a strong argument to go beyond that.

I'm very much against the attempt to turn the human body into intellectual property.
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Old 03-26-2013, 07:43 PM   #14
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Quote:
Originally Posted by BucEyedPea View Post
I don't support © on this either but she should have been informed and given the choice. Also there are privacy concerns. FSU made this woman's situation a required book to be read and one of the descendants spoke at the start of the school year. Another victim story.
Informed of what? The tumor isn't an heirloom.
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Old 03-26-2013, 07:44 PM   #15
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Informed of what? The tumor isn't an heirloom.
It's still part of her body. We get to check off if we want to donate our bodies to science.
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