by We are all living under a misconception we decide
our lives and own our bodies while the opposite is true.
The law decides our lives.
Our bodies may belong to us, but the law also governs the genetic code that creates us.
Patent Law and not the shared, necessary, Common Law of Universal Humanity rule our genes.
In a riveting Op-Ed piece in this week’s New York Times, author and creative Genius Michael Crichton — Jurassic Park, ER, etc. — broke our hearts the day before Valentine’s Day with the following news:
Gene patents are now used to halt research, prevent medical testing and keep vital information from you and your doctor. Gene patents slow the pace of medical advance on deadly diseases. And they raise costs exorbitantly: a test for breast cancer that could be done for $1,000 now costs $3,000. Why?Because the holder of the gene patent can charge whatever he wants, and does. Couldn’t somebody make a cheaper test? Sure, but the patent holder blocks any competitor’s test. He owns the gene. Nobody else can test for it. In fact, you can’t even donate your own breast cancer gene to another scientist without permission. The gene may exist in your body, but it’s now private property….
Humans share mostly the same genes. The same genes are found in other animals as well. Our genetic makeup represents the common heritage of all life on earth. You can’t patent snow, eagles or gravity, and you shouldn’t be able to patent genes, either. Yet by now one-fifth of the genes in your body are privately owned.
We’re in this mess because, 
as Crichton brightly explains, the United States Patent office make a mistake in understanding previous Supreme Court decisions and applied Patent Law protections to scientific discoveries in our genetic code.
20 percent of the genes in our bodies are currently owned by research companies — not by us — and that means private companies may collect millions of dollars in patent access research fees from other scientists who wish to investigate the genomes.
If you take a test, and a company owns the genome being tested, the results of your test — as well as your tissue — belongs to the company and not you. The company does not need your permission to keep those bits of your body and the company can do further research using your tissue to propagate profit for their genome patent without reimbursing you or acknowledging your participation.
Like the Dinosaur at the door waiting to eat you alive for your failure to predict future genetic attacks, Crichton reveals the truth of this unfortunate patenting of the map of the human body:
The results have been disastrous. Ordinarily, we imagine patents promote innovation, but that’s because most patents are granted for human inventions. Genes aren’t human inventions, they are features of the natural world. As a result these patents can be used to block innovation, and hurt patient care.For example, Canavan disease is an inherited disorder that affects children starting at 3 months; they cannot crawl or walk, they suffer seizures and eventually become paralyzed and die by adolescence.
Formerly there was no test to tell parents if they were at risk. Families enduring the heartbreak of caring for these children engaged a researcher to identify the gene and produce a test. Canavan families around the world donated tissue and money to help this cause. When the gene was identified in 1993, the families got the commitment of a New York hospital to offer a free test to anyone who wanted it.
But the researcher’s employer, Miami Children’s Hospital Research Institute, patented the gene and refused to allow any health care provider to offer the test without paying a royalty. The parents did not believe genes should be patented and so did not put their names on the patent.
Consequently, they had no control over the outcome…. The plain truth is that gene patents aren’t benign and never will be. When SARS was spreading across the globe, medical researchers hesitated to study it — because of patent concerns. There is no clearer indication that gene patents block innovation, inhibit research and put us all at risk.
The only way we can protect our bodies from the financial interests of the world conglomerates is to reunify our understanding that all natural things — the sun, the wind, the rain and the rest of things found in nature — equally belong to everyone and can only be shared and shall never be owned by anything, anyone or any entity.
There is work afoot in the political process to limit future genome profiteering by returning our genetic code to the ownership of each of us, but everything that has already been patented and branded and put away for future use will still be out of the sling of the public domain and will solidly remain in the crook of the private interests — and we’re all cheaper and less healthy for honoring the provenance of that scientific secrecy and for abiding restricted access to existing research.
We each deserve the right to freely fight the Dinosaur banging on our door.
That is shocking – I had absolutely no idea. (Can we all sue the person who made the judgement in the first place and set the precedent?)
It is a rotten set of circumstances, Nicola! We’d have to sue the US government Patent Office, I suppose, for healing. There probably isn’t much of chance of that happening, eh?
I didn’t know this. It sounds impossible. What a terrible idea! It’s just plain wrong for the quest for profits to prevent research or healing.
I am still trying to get my head around this – sounds like gross negligence – or dereliction of duty – it is very very wrong.
Question would they be so keen to do the research without the resulting patent?
Surely there must be another way to compensate them?
Incidently ( proud mommy moment) – my youngest just scored 96% in her Organic Chemistry and 68% in Inorganic Chemistry mid term exams – Pharmacology next at Easter.
Patent law always seems a dry and dusty subject, but it is interesting that it can have major effects on our lives.
I am somewhat outraged that people are being denied treatments because something that seems like it should be in the public domain is being patented. But, I can also hear my mind arguing that genetic research will not be done if research companies are not allowed to make a profit.
My outrage is also tempered by the fact that some company outside of the U.S. — probably in India or China — will develop the same technology and export it sooner or later. Thailand threatened to do this with AIDS drugs and it resulted in a price drop:
Hi icedmocha —
It is particularly reprehensive that individuals are not allowed to sell body parts or organs for profit in the USA. You may only “donate” bits of your body — though the MDs and hospitals change charge outrageous amounts for performing the transplant operations.
So when the human genome gets patented and split up — we once again learn the hard lesson that those who have will always get and those who do not have will never.
Hi icedmocha —
It is particularly reprehensive that individuals are not allowed to sell body parts or organs for profit in the USA. You may only “donate” bits of your body — though the MDs and hospitals change charge outrageous amounts for performing the transplant operations.
So when the human genome gets patented and split up — we once again learn the hard lesson that those who have will always get and those who do not have will never.
Hi Nicola —
It has been proven pretty resoundingly that competition for money, research dollars or just plain fame — can drive medical research just fine without granting any patent protections.
If you look at the history of HIV and AIDS and how AIDS is a virus — two labs were working together and against each other to beat the other to the discovery. One was in America, the other in France. There was a great contention between sharing results and then claiming the results as one’s own.
Randy Shilts wrote a wonderful book called “And the Band Played On” about the infighting and there was an outstanding TV movie based on his book starring a most evil Alan Alda as Dr. Robert Gallo:
http://www.imdb.com/title/tt0106273/
Congrats to your daughter! My grandfather was a pharmacist in a small town for all of his adult life. He was the therapist, pill dispenser, “doctor,” “vet” and everything else the town needed when it came to curing or feeling better.
Hi Nicola —
It has been proven pretty resoundingly that competition for money, research dollars or just plain fame — can drive medical research just fine without granting any patent protections.
If you look at the history of HIV and AIDS and how AIDS is a virus — two labs were working together and against each other to beat the other to the discovery. One was in America, the other in France. There was a great contention between sharing results and then claiming the results as one’s own.
Randy Shilts wrote a wonderful book called “And the Band Played On” about the infighting and there was an outstanding TV movie based on his book starring a most evil Alan Alda as Dr. Robert Gallo:
http://www.imdb.com/title/tt0106273/
Congrats to your daughter! My grandfather was a pharmacist in a small town for all of his adult life. He was the therapist, pill dispenser, “doctor,” “vet” and everything else the town needed when it came to curing or feeling better.
Hi Chris —
Remember research hospitals were built to do research — sure, they can make a lot of money on patents and if you teach and work there your patents belong to the university and not you — but, as Crichton argues, patenting gene research creates less research, not more, because other labs don’t want to get sued for infringing on the intellectual property rights of another entity –- so instead of hundreds of minds working on world cures across the globe, you only have a few researchers laboring away in a local lab. SARS research is the example Crichton provides where there is no cure because other labs will not join the fight because of preexisting patents.
I think our greatest hope in creating good gene therapy resides outside the reach of US law and US conservative religious morality. There are hard choices that need to be made to create cures and none of that happens if the science is monetarily restricted or pounded down by the wrongly invoked hand of God.
Hi Chris —
Remember research hospitals were built to do research — sure, they can make a lot of money on patents and if you teach and work there your patents belong to the university and not you — but, as Crichton argues, patenting gene research creates less research, not more, because other labs don’t want to get sued for infringing on the intellectual property rights of another entity –- so instead of hundreds of minds working on world cures across the globe, you only have a few researchers laboring away in a local lab. SARS research is the example Crichton provides where there is no cure because other labs will not join the fight because of preexisting patents.
I think our greatest hope in creating good gene therapy resides outside the reach of US law and US conservative religious morality. There are hard choices that need to be made to create cures and none of that happens if the science is monetarily restricted or pounded down by the wrongly invoked hand of God.
David,
I just can’t wrap my brain around this.
I keep thinking, “How could this happen?”
The moral restrictions imposed upon scientific research are crippling enough. Do we really need some company tapping its foot impatiently and holding its hand out for a piece every time specific genetic material enters the equation?
Ugh. Sick and wrong, in my opinion.
David,
I just can’t wrap my brain around this.
I keep thinking, “How could this happen?”
The moral restrictions imposed upon scientific research are crippling enough. Do we really need some company tapping its foot impatiently and holding its hand out for a piece every time specific genetic material enters the equation?
Ugh. Sick and wrong, in my opinion.
Pretty soon someone will come up with a process patent for the way people’s mind operate. Every time we have a thought, we’ll have to pay a royalty to “The Man.”
When that happens, I’m going to park myself in front of the television so that I don’t have to pay royalties. 😉
Hi Emily —
This is what happens when big business is allowed to set the policy for medical research and scientific discovery: Information and results get privatized instead of prioritized and that’s an awful thing for the whole of society.
Hi Emily —
This is what happens when big business is allowed to set the policy for medical research and scientific discovery: Information and results get privatized instead of prioritized and that’s an awful thing for the whole of society.
I think you’re right about that, Chris, and with the new bionic eye implant, the brain is just a little deeper in for collection and control:
http://www.guardian.co.uk/medicine/story/0,,2015269,00.html
I think you’re right about that, Chris, and with the new bionic eye implant, the brain is just a little deeper in for collection and control:
http://www.guardian.co.uk/medicine/story/0,,2015269,00.html
It is strange that we control our bodies but not our genes. I have a hard time thinking this will last, David, because money can’t always win over medical progress, can it?
It is strange that we control our bodies but not our genes. I have a hard time thinking this will last, David, because money can’t always win over medical progress, can it?
Anne —
Let’s hope a groundswell of support builds as people are told their tissue belongs to “The Company” and not to them and that “The Company” has the legal right to use their tissue for testing and profiteering.
Anne —
Let’s hope a groundswell of support builds as people are told their tissue belongs to “The Company” and not to them and that “The Company” has the legal right to use their tissue for testing and profiteering.
No one owns anything body/mind/spirit/genes etc. It’s just an interpretation or way of looking at things. Hate to keep quoting Nietzsche but as he said over a hundred years ago (paraphrase) “There are no facts merely interpretations, and what are currently called facts, are merely functions of power.” Not that any of us needs our stomach turned more than it already should be but check out the B.F. Skinnerian shock therapy tax payers pay $200,000/year/child for, to control severly retarded ande autistic children’s behavior, so that one day “they will be able to have a job.” http://www.judgerc.org/progdescbrief.html
The video that was shown on T.V. was even more revolting than anything that can be intuited from this fascist type treatment to make everyone tow the line of homogenized/military order.
No one owns anything body/mind/spirit/genes etc. It’s just an interpretation or way of looking at things. Hate to keep quoting Nietzsche but as he said over a hundred years ago (paraphrase) “There are no facts merely interpretations, and what are currently called facts, are merely functions of power.” Not that any of us needs our stomach turned more than it already should be but check out the B.F. Skinnerian shock therapy tax payers pay $200,000/year/child for, to control severly retarded ande autistic children’s behavior, so that one day “they will be able to have a job.” http://www.judgerc.org/progdescbrief.html
The video that was shown on T.V. was even more revolting than anything that can be intuited from this fascist type treatment to make everyone tow the line of homogenized/military order.
Hi fred —
I realize no one should own the body but when companies claim ownership via patent and the power system supports them by enforcing law and threatening imprisonment and lawsuits — what is left for us to use in a fight against those awful interests?
Hi fred —
I realize no one should own the body but when companies claim ownership via patent and the power system supports them by enforcing law and threatening imprisonment and lawsuits — what is left for us to use in a fight against those awful interests?