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BABIES with a severe form of epilepsy risk having their diagnosis delayed and their treatment compromised because of a company's patent on a key gene.
It is the first evidence that private intellectual property rights over human DNA are adversely affecting medical care.
Deepak Gill, head of neurology at the Children's Hospital at Westmead, said he would test at least 50 per cent more infants for the SCN1A gene - which would diagnose the disabling Dravet syndrome - if the hospital could conduct the test in-house.
But rights to the gene are controlled by the Melbourne-based Genetic Technologies, which has already threatened to stop public hospitals testing for breast cancer gene mutations, and the hospital will not risk a similar problem.
Originally posted by 44soulslayer
reply to post by Maxmars
Lets not go overboard here.
...
Profit in healthcare is not bad; it motivates and drives healthcare providers to greater heights.
Genetic Technologies' claim to have patent control over methods for researching non-coded, or "junk", DNA.
The Melbourne-based Genetic Technologies has consistently warned it would sue any company, research institution or university that infringed its patent over the so-called junk DNA.
In the past, scientists concentrated on a tiny 1.5 per cent slice of the human genome, dismissing the remaining 98.5 per cent DNA system as useless.
But since early sequences of the human genome were released in 2000, scientists around the world realised the non-coded sections of DNA played a role in switching particular genes on and off and so were crucial in finding cures for gene-related diseases.
GTG was set up in 1989 and provides a range of commercial genetic testing services for humans, animals and plants. It provides DNA profiling services, including paternity tests and forensic DNA analysis, genetic diagnostics for several diseases in humans and animals, and trait analysis for animals and plants.
...
GTG specialises in non-coding DNA and has over 100 patent applications, as well as granting 36 licences. In addition to genetic testing and its out-licensing program, the company has a dedicated research program in genetics and genomics.
In December 2005, GTG settled a protracted lawsuit with Applera for an estimated US$7.5 million "in cash and in kind -- equipment, reagents, and intellectual property," said Jacobson. The deal also included other business opportunities, although there is no attached financial value on them.
The Applera lawsuit was widely regarded as a bellwether dispute. With its sixth and most drawn-out lawsuit successfully settled, there is little to prevent Jacobson and GTG to extend its list of patent licensees from the current number of around 30 to potentially hundreds of previously identified targets.
"We have 2000 entities in our database, of which 400 have been looked at and seem to be commercially significant," says Jacobson. "We are now expanding the licensing team and we're looking to appoint licensing contractors in the US, Europe, and Asia." GTG seeks to hire representatives on both the west and east coasts of the US, as well as in English- and German-speaking parts of Europe.
Originally posted by 44soulslayer
reply to post by Maxmars
Lets not go overboard here.
There are some vital aspects of medical innovation that have effectively come out of profit seeking and patent protection. Some people see this profit as immoral, but they never consider where innovation would be without it.
Im involved in medical research. My primary motivation is not solely to help people... its also to make a profit. Frankly I just wouldn't bother innovating if I couldn't make a living out of it; or if my inventions could simply be taken and used by others.
Profit in healthcare is not bad; it motivates and drives healthcare providers to greater heights.
This case outlined by the OP is a specific (and horrible) malfesiance.
Profit is fine as long as its warranted. The fundamental basis of patent law states that you cannot patent discoveries... you can only patent innovations. Genes are clearly discovered in my opinion, and cannot be patented. I would also say that certain naturally occuring chemicals (such as penicillin, insulin etc) should not be patented.
The IP judge in this case was way off.
....What Roth figured out to do next was to fail again--to fail again while making good on his promise to create something of immediate benefit to human beings. See, it's notoriously hard to diagnose the autoimmune disease lupus. But back when he was doing RNA splicing, Roth had figured out a way to do it, and now he set about trying not only to develop the test but to take it to market--himself. And he did it. For three years, that's all he did, nonstop: He developed the test, got the patent, and then went out and got FDA approval for what he had created. He was, as far as he knows, the first scientist ever to get FDA approval for a diagnostic test all by himself, without the help of a corporation, in an academic setting. Now he had just what he wanted--something that solved a problem, something that actually helped people.
You know how many people it helped? Roth makes a steering wheel with his arms to show how many people it helped. It helped nobody. It was a big zero. Not because it didn't work; rather, because there was no market for it. Or because there was a market for it, but it wasn't big enough to convince any pharmaceutical company to manufacture and distribute it....
Originally posted by 44soulslayer
Is it worth spending $12,000 on a test for Lupus when $50 spent on a mosquito net could save ten times as many people?
Originally posted by Maxmars
Profit is their God.
Originally posted by scientist
Originally posted by 44soulslayer
Is it worth spending $12,000 on a test for Lupus when $50 spent on a mosquito net could save ten times as many people?
Ive spent countless hours (much to the disdain of my classmates) in the past debating this exact thing in a few legal courses I took. It's a philosophical thing to a certain extent, but the problem is that the motivation to help people is not just on par with motivation for profit... in many cases, the motivation for profit can trump and override any sort of charitable intents.
Originally posted by HunkaHunka
What do you mean when you say "It's a philosophical thing to a certain extent"?