A "Genetic Bill of Rights"
A Genetic Bill of Rights--From Lori Andrews, a professor at Chicago-Kent College of Law, who chaired the federal ethics advisory committee to the Human Genome Project.
* You should have the right to refuse genetic testing and not to disclose genetic information, except in criminal cases in which there is individualized suspicion.
* You should not be discriminated against by insurers, employers, schools, courts, mortgage lenders or other institutions based on genetic tests.
* If you undergo genetic testing, you should have the right to control who receives the results.
* Your genes should not be used in research without your consent, even if your tissue sample has been made anonymous.
* Your genes should not be patented.
Makes sense to me. Yet, apparently 20% of our genes are owned by companies holding patents, which is having a chilling effect in medical testing.
posted by Wesley J. Smith @ 8:19 PM
14 Comments
14 Comments:
I think the solution to the idea of human gene patents like that would be to try to get one granted, and then after getting it granted seek to sue living people for infringement.
It would end up in court, and the silliness of the whole idea would come to light and hopefully be solved. Although perhaps Judges are that stupid.
But the patents have already been issued. The patent office needs to be restrained, perhaps in court.
I agree with the first 4 rights, but not so sure about the patents. I haven't quite made up my mind on the whole gene patenting thing, I'd like to see what kind of patents the companies want. If it patents for gene isolation or recombination into bacteria, which I imagine the vast majority of these things are, big whopty deal.
But even if there gene patents, you cannot be sued for living. That's not the basis of infringement.
Besides, you can't patent natural process, even if you discover it.
I just read over the article. It is ripe with factual errors concerning what gene patents actually cover.
Yes, medical inventions are expensive. So? This is no different than pharmaceutical development. If it's so bad to reap a profit in healthcare, the alternative is to socialize it.
However, I would agree with this statement:
You don’t even have control over your own tissue or blood once it’s donated for research,” notes Crichton. “You have more control over what happens to your photo.”
I think that is a problem as well.
Having worked for a company that holds a huge portion of the patents on human genes, I see the importance of being allowed to patent genes - we wouldn't have been able to develop our drugs with full disclosure about our methods if another company could look at the work we have done so far and use their more advanced manufacturing capabilities to beat us to market. So there is some need to protect companies using this "intellectual property" in their drug development. However, I also have a huge problem with another result of gene patents - there was a case when many people had donated DNA samples to a scientist who was trying to isolate the gene for a particular genetic illness, but once it had been isolated and patented by that scientist's university (and the rights sold to a company that was developing a commercial test for the disease), the scientist was not allowed to help test those same people's family members for the illness. That strikes me as very unethical and an improper use of patent protection. Is there any middle ground, or does there need to be some sort of replacement for patents when it comes to genetic material?
Kelly: First, how can a gene be patentet? A gene isn't a human invention. Your processes in working with that gene should certainly be patentable. But a gene is natural. I mean, can we patent a nose? Thanks.
What's patentable are the uses and isolated forms of the gene, not the natural forms. Natural processes are not patentable under 35 USC 101 (defining patentable subject matter).
Bearing that in mind, I'm at a loss of what actually is the problem here.
If I isolate a gene, does that make it no longer natural? If I isolated a blood cell, could that be patented?
Now, if I had a use for the non patentable gene, that I could see. If I engineered the gene so that it was now a human invention, that I could see. If I patented the way of isolating the gene, that I could see.
But the gene itself, I still do not see.
As to preventing genetic discrimination, that is a very big problem for government in coming years.
Short answer - maybe.
If you isolate the gene, then it is no longer natural. Same with blood cell.
But you don't have a patent yet as there are a number of other hurdles you need to cross.
Some of the most lucrative and beneficial to medicine patents were the EPO/insulin patents, where they took the human genes for EPO and insulin, put them into bacteria, and the bacteria churned out tons of EPO and insulin. That improved and saved the lives of countless numbers of people.
In the natural state, the law already won't let anyone patent a gene. But isolated and put into bacteria, yes, and with very good reason.
This is very helpful, Royale. I see the gene in the bacteria patent. But I still wonder about the gene itself. So, if you own the gene in the bacteria patent, could you prevent me from isloating the same gene and using it for something else, say, putting it in human growth hormone?
On the left hand of it, I think I lean more in Royale's direction with regard to patenting genes. I'd like to see what kinds of patents are being requested before I make any type of judgment on the issue. I can see companies wanting their recombined genes to be kept to themselves, because a company with complete exclusive access to one type of genetic combination can devote itself to fully exploring the possibilities the genes can provide, and I'm for anything that reduces human suffering and pain. If letting a company "own" a patent for a particular gene will increase the likelihood that a cure for a specific ailment will be found, then I'm all right with it.
On the right hand, though, there's a lot of potential for abuse. One of the big problems with drug companies and their patents is that it takes so long for the patent to go out and then you finally get generics, but until then you have to fork over a lot of money, and some people really do have to juggle between, "Do I eat or do I get my meds this week?" I speak from experience here, and I could see that kind of thing happening with health benefits brought about through genetic patenting.
The other thing I'm afraid of is the potential for large corporations to pull a Walt Disney and fight to get the patents extended, making it harder for people to pay for necessary treatments.
I still sort of lean in the direction of "the benes outweight the cons," but I can see why Wesley is so concerned, and I respect that concern.
Tabs
Regarding big corporations: I retain my Ralph Nader roots!
"I see the gene in the bacteria patent."
If its a human gene in a bacteria, then that's a basis for a patent. If it's a natural bacteria gene in the bacteria, then no patent because it is natural.
"So, if you own the gene in the bacteria patent, could you prevent me from isloating the same gene and using it for something else, say, putting it in human growth hormone?"
In this context, patents are for uses and isolations of the genes, not its natural state.
If your patent covers a human gene in a bacteria, then someone can isolate the gene and put it into another organism, as long as its not bacteria (i.e., a virus, a mouse, a pig, etc...).
Also, and this is critical, all patents require a purpose for the invention. So, it's not enough to isolate a protein or a gene, but you need to know precisely what it actually does.
If your patent covers the isolated gene, then no one can isolate the gene without your permission.
When Big Biotech does this, they get lots of patents covering different aspects of the gene. For instance, Amgen has had several different EPO patents covering different levels: (1) isolating the protein (now expired), (2) putting the gene into an organism (hamster ovary cells) that will churn it out, and (3) using the protein in medicine.
A lot of work for lawyers!
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