Should Firms Be Able to Own Your Genes?

(CBS)  We may have inherited some of our finest qualities from parents and grandparents, but like anything else, there is a downside: part of that inheritance could be a disposition to a variety of deadly diseases. But the good news is that since the mapping of the human genome, science has made some giant leaps in detecting and treating inherited conditions.

By detecting those genes, for example the genes that predispose women to breast cancer, doctors can offer preemptive treatment. It sounds simple enough, but there's a catch: a woman may have that gene, but strange as it seems, it's really the property of a biotech company that has taken out a patent on it.

So far, nearly 10,000 human genes have been patented, all of them now in question based on a court ruling this past week.

Because, as "60 Minutes correspondent Morley Safer reports, whether you like it or not, under current law a vital part of who you are actually belongs to someone else.

Full Segment: Patented Genes
Web Extra: Cancer and Gene Patents
Web Extra: Gene Patents, Pro and Con
Web Extra: The Supreme Court and Gene Patents

Lisbeth Ceriani and Genae Girard were both diagnosed with breast cancer.

Ms. Girard was diagnosed at age 36, Ms. Ceriani at 42. Breast cancer at a relatively young age is often hereditary.

"Because of my age and the disease was already very aggressive in me, they thought there is most likely a genetic component at play," Ceriani told Safer.

The way to find out is through a test called BRAC Analysis, a blood test in which lab technicians at a company called Myriad Genetics examine two genes that exist in all of us.

If mutations - irregularities - are found, it means the risk of getting breast cancer and ovarian cancer is extremely high: breast cancer five times more likely, ovarian cancer as much as 40 times more likely.

Since a positive result usually means the removal of ovaries before cancer can develop, doctors told Ceriani she needed to get tested.

"I did try to have the test done several times," she said. "My insurance actually covers the test and would pay for the test. But the lab won't accept my insurance."

Myriad Genetics charges about $3,200 for the test, and most insurance policies do cover it. But Myriad won't accept Ceriani's plan because it won't pay the full amount.

"I don't have the $3,200 to pay for that test," she explained. "And I spent days trying to track down what is going on. If my insurance covers it, there must be someplace else I can bring this test. I mean it's a simple blood test, it's not a complicated procedure. And after all the research, I found out why and learned Myriad is the only game in town and they want it all."

Myriad Genetics controls all testing on the two breast cancer genes because they own the genes, lock stock and barrel. They patented them and no one else can legally test for them, or look at them, or even develop potential therapies that are based on them without Myriad's consent.

When it comes to inherited breast cancer, it's Myriad or nothing.

Just ask Genae Girard. Since doctors suspected that her cancer was also genetic she too got tested and her results were positive. Doctors recommended that she have a double mastectomy and have her ovaries removed.

"Which was a very tough decision. I mean, I'm still in my 30s and this is going to change my life whether or not I ever wanna have children. And that was a big deal," she said.

So she did the obvious: sought a second opinion - another genetic sequencing from a different lab.

But her doctor told her that wasn't possible.

"I think Myriad Laboratory is a very reputable company. But I know for a fact that there's human error that exists in laboratories and I would have felt a lot better about these decisions if I had that," she said.

"So, whether you like it or not, Myriad owns that gene that's in both of you," Safer remarked.

"Yes," Girard replied.

"No one invented my gene. They didn't change or alter my gene," Ceriani told Safer. "All they're doing is looking at it. It's crazy."

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[imjustamazed]

Isn't this gene "ownership" a form of slavery? If Myriad Genetics "owns" the gene in question, don't they technically own part of you without your permission? I mean, this isn't like, say, the entertainment industry where you may have been "gifted" by nature with an amazing talent and you consciously and voluntarily "sold" your talent contractually, and are therefore "owned" in some way by a studio or an agent. Perhaps more to the point, if someone had an extremely rare blood type or was a "carrier" of extreme interest to the medical community, should a company like Myriad Genetics (who may have been searching for and identified what you possessed naturally) be able to arbitrarily and capriciously restrict your rights as to how you chose to allow this "possession" to be used. Since these two women never voluntarily "donated" or "sold" their gene to Myriad Genetics, hasn't Myriad Genetics unilaterally enslaved them to Myriad Genetics in some way. Well, sure sounds like a form of "involuntary" slavery.

[th9876]

The companies get away with whatever our elected "leaders" let them get away with. Even owning genes, which I find absolutely ludicrous.

[nichol16]

elected "leaders" are not at fault its the patent courts that overstep the regulations every time. For the people that you elect this is out of their jurisdiction the only way for anything to change is by a suit brought up behind a civilian directly or indirectly affected.

[th9876]

The companies get away with whatever our elected "leaders" let them get away with. Even owning genes, which I find absolutely ludicrous.

[iwatchit]

I think that the ACLU missed the better position to litigate. Instead of questioning the company?s right of ownership, the ALCU should have brought a suit against the company with charges of product-liability and criminal-negligence. Since the company owns the genes, they must be responsible for their product and its consequences to the public. So given that these genes contribute to a predisposition or even cause breast cancer, the company is liable for such cancer cases. They also are responsible for their negligence in correcting the problem that their genes produce, failing to warn the public and individuals that they are at risk from these defective products, and that they must assume full fiduciary responsibility for correcting these problems. With respect to the individuals that they have harmed, the company should be required to also pay punitive damages.
I think that a jury of fair-minded American citizens would be likely to agree that this company should be and would be held responsible for their product, and that their irresponsible actions to date should be made an example of to the corporate world that in the United States no company will be permitted to exercise ownership rights without complete and absolute accountability for their product and its consequences to the public. After an example is made of the company in the breast cancer genes case, I think it would be reasonable for the US Government to offer a amnesty period for other companies that hold such human gene patents to rescind their patent ownership claims and turn any and all future ownership right over to public-domain ownership.
The executives of the company that loses the court case would be unfortunately completely wiped out, or we should do all that we can to insure that result; but the long-term benefit to the American people and surely to the citizens of all countries would be well worth their inconvenience. After all it seems only fair that they should pay for their poor judgment, management, and sense of responsibility.

This position is from now4yourconsideration.blogspot.com other topics can be found there.

[hdrdacrewd]

I've been subjected to this ridiculous situation. After 15 years of looking at a bunch of different physical issues, finally a neurologist ordered a neurological genetic test. One company, Athena, owns the patent on all neurological genetic testing. They don't accept insurance companies negotiated rates, and I agreed to pay around $1700 for my "Patient Protection" part of the price of this one very limited test. All neurological genetic tests were not run, just one very limited scope. When my results came back with a diagnosis of Axonal CMT Neuropathy, it seems that my particular mutation has not been seen by Athena before. So, they would like for my entire genetic family to submit samples ($1700 each) just to have in their data base. (No treatment No cure) As I see this, they are condemning me and mine to a slow debilitating death, because no one else can do research on this disease to find a cure or treatment.
Do I have the right to sue them, because they are limiting my options for life and treatment?

[bobnjersey]

[So far, nearly 10,000 human genes have been patented, all of them now in question based on a court ruling this past week. ]

the patents are invalid.

everyone already had the gene ... and have for all of time.

those holding the patents didn't create them ... don't sustain them ... and therefore have no rights to them.

now ... if you're talking about a method to detect ... or to verify existance of ... that's a different story.

[northof62]

No chance for an ethical debate whether companies can do this? Companies were allowed to register gene patents and now that is the status quo? And they can monopolize testing, deny applications for testing, deny insurers, deny other researchers..could they come to a point in the future to deny treatment because someone has a recessive gene and the companies wish to see how it replicates? This is capitalism allowed to flourish without boundaries in its finest form. This could end up being the ultimate eugenics experiment.

Tea-baggers - now this truly is a project to sink your teeth into. This could be the "death panels" you speak of, not more health care for the uninsured including "pre-existing conditions" of new borns.

Oh wait, the allowing of patents on genetic codes could be the ultimate in defining "pre-existing" conditions and the means to deny insurance for hundreds and thousands more from gaining health insurance - oh - but the new Health Care Bill will deal with the medical insurers - now government has to deal with this type of corporate scavenging of the human genetic code and defining for profit the health care of the American population in the future.

[steeepe]

I think the Patent Office made a mistake by allowing gene patents. I hope it's overturned by the courts. Patenting assays or novel isolations or novel constructs seems fine, but nature made genes, not companies.

[wjss75606]

Does this mean if something is wrong with your genes that you will be able to sue the patent owner for a defective product? It only stands to reason if they own the patent they are responsible for the genes and any malformations incurred by them. No different than a drug company, chemical company etc. SUE THEM ALL!!!including the scientist.

[kitty8617]

Looks to me as if the only real way to protect your rights to yourself, is to acquire a patent on your unique genetic properties. Just word it clearly enough to cover all contingencies. At least that way they would have to pay you if they want to use your genes.