posted
I find it hard to believe the number of pathologists that are listed as plaintiffs,along with the cancer patients,in the lawsuit... Yale,Harvard,IDSA...you listening? I think the outcome of this is really worth watching.
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Perhaps if the ACLU takes a look at the patents held by the IDSA guideline's authors it might help them make their case for Genae Girard.
It will illustrate how patents on tests can cause HUGE problems for suffering people & impede medical progress.
The publicity might also be helpful right now, in light of the current guideline review.
Good find Joe!
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
What if we all write to the ACLU?
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
- I couldn't find an E-mail address but I found an address & phone # for the ACLU in NY:
New York Civil Liberties Union Executive Director: Donna Lieberman 125 Broad Street, 19th Floor New York, NY 10004 Phone: 212-607-3300 Fax: 212-607-3318
I don't know the best way to approach this. Not sure of exact facts. Ideas?
Geri
Posts: 151 | From Kingston NY | Registered: Nov 2008
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posted
I think making medicine a business in general is immoral. I don't have a solution, but once money gets involved it corrupts everything. Everyone should have equal access to health care and it should be provided at a cost that is low as possible to society.
Posts: 743 | From New York | Registered: Apr 2009
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posted
If you re-visit the link posted above, it now has a picture of Ms.Girard, along with a "Today" show interview, which was not available when I first posted this.It seems to me that this particular instance had "tied the hands" of various pathologists,and their organizations, not even mentioning the patients,who only wanted a "second opinion". Perhaps this lawsuit will have repercussions beyond the breast cancer diagnosis / treatment arena. I forwarded this to CALDA's lead attorney,but not knowing the exact e-mail address, I sent an e-mail with my feelings,and the link to their and ILADS' website..The (Contact Us) portion..... Joe
Posts: 249 | From Northern NJ | Registered: Jul 2005
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
The U.S. Patent and Trademark Office (USPTO) grants patents on human genes, which means that the patent holders own the exclusive rights to those genetic sequences, their usage, and their chemical composition.
Anyone who makes or uses a patented gene without permission of the patent holder - whether it be for commercial or noncommercial purposes - is committing patent infringement and can be sued by the patent holder for such infringement. Gene patents, like other patents, are granted for 20 years.
For example, Myriad Genetics, a private biotechnology company based in Utah, controls patents on the BRCA1 and BRCA2 genes. Because of its patents, Myriad has the right to prevent anyone else from testing, studying, or even looking at these genes.
It also holds the exclusive rights to any mutations along those genes. No one is allowed to do anything with the BRCA genes without Myriad's permission.
How many genes are patented?
A 2005 study found that 4,382 of the 23,688 human genes in the National Center for Biotechnology Information's gene database are explicitly claimed as intellectual property.[2]
This means that nearly 20% of human genes are patented.
In addition to the BRCA genes, genes associated with numerous diseases, both common and rare, are patented, including Alzheimer's disease, asthma, some forms of colon cancer, Canavan disease, hemochromatosis, some forms of muscular dystrophy, Long QT Syndrome, and many others.[3],[4],[5],[6],[7]
You mean companies can patent the genetic test, not the gene itself, right?
No. Myriad has a patent on the BRCA1 and BRCA2 genes themselves. If Myriad had simply patented a test, then other scientists and laboratories could offer alternative testing on these genes.
But because it has patented the genes themselves, Myriad has the right to control all research and testing on or involving the BRCA genes.
.....
I'm signing the message of support & adding my own blurb about the IDSA guideline author's patents!
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
An interesting and disturbing article. Thanks for posting.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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posted
My comment to the ACLU: I certainly hope these patents are overturned.--Not only does relegating all tests and diagnostics to one firm seem monopolistic, it is stifling what could also be valid research by other organizations,be they academic or commercial. I'm afraid the original decisions were the result of not enough insightful debate at the time. Besides, what right did the USPTO have to grant patent status to an essential element of all we consider living? Makes me wonder if someone would now want to patent air,or water?
Posts: 249 | From Northern NJ | Registered: Jul 2005
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**Making money while limiting research and ultimately medical options is a criminal act.
Breast cancer is not the only illness affected by gene patenting.
Lyme disease is also adversely impacted by this.
Much research is blocked by this ridiculous practice.
It should be stopped. Patent a test or medicine, not a gene. **
Gerifrog
Posts: 151 | From Kingston NY | Registered: Nov 2008
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ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
You all want to read a scary fiction novel based on gene ownership, read NEXT by Michael Crichton (may he rest in peace). The story blends fact and fiction, and is based on the fact that 1/5 of all of our genes are owned by someone else.
The truth is stranger than fiction. Be sure to read the Author's Note at the end. The book also contains a bibliography to document texts he used to research the book.
Michael Crichton was a Harvard-educated physician, so while many of his novels were fiction, they were often fact-based. I found NEXT to be a fascinating novel.
Posts: 2275 | From NC | Registered: Oct 2000
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