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Gene Patents:
Who Should Be Responsible For the Effects?
Beth Merrifield
Academic affiliation: Oklahoma State University
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In 1952 Jonas Salk was asked whether or not he intended to patent his polio vaccine and he responded, “Can you patent the sun?” (Tebo 46). Since then the race to patent genes has begun. In Wil S. Hylton’s piece “Who Owns This Body?” he explores the motives behind the scientific research that has resulted in the patenting of genes, blood cells and other parts of the human body. Hylton shows how pharmaceutical companies or genetics companies with patents have exclusive access to the genes that they own. When seeking who is responsible for some of the most horrendous diseases of our time, we should look towards those who control the genes. They receive large amount of money when their patents are researched or used, therefore they should take responsibility for the lives affected by or even lost to the gene they claim as their own. The patent owners have exclusive rights to their patents, they control when and where they are used. “If you want to know if you have the gene for breast cancer you are going to have to call someone for permission,” which enables companies like Myriad Genetics to charge $2,500 to test people for this gene (Hylton 109). The patents that these companies hold allow them to restrict the use of their genes or demand outrageous sums of money for their use, which means they are potentially withholding lifesaving information from the public. People are expected to be responsible for their bodies and health. Many people eat certain foods and take vitamins to avoid cancer. Frequently, people are blamed for their diseases; they are smokers, sunbathers or otherwise mistreat their bodies. Yet, many people would be able to beat or avoid disease entirely with one test. If the owners of the genes that cause these diseases were held liable, they would become more aware of their moral obligations to society. An obese person can sue McDonalds for their obesity, something they have control over, but the victims of breast cancer have no recourse in dealing with their disease. These people have no control over this gene, but Myriad Genetics does and they should be held responsible for that.

Patent holders have exclusive access to their gene, and are not bound by any sort of law to provide genetic testing to anyone: “the patent holder could, in fact, prohibit or restrict certain medical tests that would require isolation of that gene” (Tebo 48). Originally, genetic tests are relatively inexpensive, about $50 a test. However, once a gene is patented that cost skyrockets to around $2,500 to pay licensing fees (Benowitz 9). These astronomical fees prevent many people from receiving life saving tests. Not only does this prevent crucial test from being delivered to anyone but the most affluent people in society, the lack of people receiving these tests discourages medical companies from administering them at all. This immediately raises concerns about the health hazards that patenting creates.

Could a vicious disease like breast cancer be better controlled if BRCA1 was not patented? Many professionals feel that it could be. Patenting creates a monopoly that restricts what can be done with the gene. Charis Eng, M.D., PhD., a professor and geneticist at Ohio State University states: “As a clinical cancer geneticist with patients who need this testing, we don’t appreciate a monopoly,” (Benowitz 9). While she respects Myriad’s research and testing methods they are not accessible enough to improve the welfare of any patients.

Many in the medical field are concerned due to past experiences with patents. In the mid-1990s, doctors began to apply for patents on surgical procedures. These patents were detrimental to patient care because “some surgeons did not use the most effective procedures available because the license fees were simply to high” (Tebo 50). However, “in 1996 Congress created an exception to the law, stating that use of a patented surgical procedure to provide direct medical care to patients does not infringe on patent rights” (Tebo 50). Many are afraid of a similar situation with genetic patents. Widely used diagnostic procedures could be restricted because they involve patented genes, limiting the amount and quality of care available to patients. However, because of the broad uses for genes and their patents “the value of a genetic patent is greater,” (Tebo 50). The value of these patents is sure to ignite a strong debate over any kind of Congressional action, diluting the control patents owners have over their genes. It will be crucial for laws restricting the use of patents to be enforced for the quality healthcare to continue. Congress plays a large role in limiting the power of organizations and businesses in the U.S. In a capitalist society our government keeps a close eye on economic monopolies. Historically, monopolies have not been allowed to exist. Recently, Microsoft, a computer company, was broken up due to monopolistic characteristics. Microsoft’s undeniable presence in the computer field was detrimental to the development of new companies as well as the creation of new software. A similar monopoly is arising in the genetics field, and whether or not Congress will be able to intervene and to what extent they will do so, is crucial to the future of genetic patenting and patient care. Because of the monopoly on genes, not only does genetic testing become rare and expensive, there is no competition between genetics companies to create better technology: “No one is interested in sequencing patient samples unless you can return the results to the patient or publish in a journal,” (Benowitz 9) this creates a stagnant environment and research on important genetic issues is slowly brought to a halt. This is detrimental to the care that patients receive because doctors are unable to provide them with the best and most current information. If a unique thing like a gene is patented it cannot be used in research by other scientists to improve upon current techniques, and allows the owners of the patent to become lax in their research: “This is the major problem with gene patents in general. Eventually, progress will slow down” (Benowitz 9).

When research and scientific curiosity on a subject slow it can have major repercussions on society: “One of the major complaints against the tests is the technology’s inability to find all of the BRCA1 mutations” (Benowitz 8). Inefficiency in the system is a direct result of the lack of motivation within scientific companies. Those who hold patents have already accomplished what they wanted, and those who do not, do not want to pay high fees and live in the shadows of someone else’s discoveries. It is not only a significant setback to the field of science but greatly decrease the level of care patients could one day receive with optimal technology and resources.

Not only does the research slow while genetics companies bring in major profits, but humans are exploited without their knowledge. Companies are not obligated to inform patients who are fortunate enough to receive some kind of testing what their test are being used for and the research done on their cells is not relayed to them. Many questions arise regarding privacy laws and the morality and constitutionality of these practices. Genetics companies and their lawyers feel that “the patent office is not the place to regulate” (Tebo 49). It has been recognized that patients have very few rights in dealing with patents and large corporations. One answer to this issue would be for Congress to “mandate that patients be told exactly what sort of research might be done with their tissues-and whether the researchers expects to patent, and profit from, the results of that research” (Tebo 49). A law such as this one would allow patients to make informed decisions and create a more responsible and structured environment for gene patenting.

John Moore is an example of how genetics companies are able to use human beings unknowingly without any consequences. When John Moore, a victim of hairy-celled leukemia, has his spleen removed by Dr. Golde he assumed that the many follow up visits and Golde’s eagerness for him to return was routine. However, it was not. Not only did Moore pay for doctors visits and airplane tickets, he received no compensation from the $1.5 million that Dr. Golde received from selling Moore’s spleen. Moreover, California Supreme Court did not agree with Moore when he argued that it was his body and therefore he was robbed of his cells. When Goldie got his patent on Moore’s cells, Moore had, “neither title to the property, nor possession thereof” (Hylton 109). In the end John Moore did not have any legal claim to his own body.

If Moore is does not own his cells and genes and a genetics laboratory 1,000 miles away does, who is responsible for what happens to Moore’s body? If Moore were to get skin cancer, many would say it was his fault from overlong exposure to the sun. However, if someone owns that gene or cancer why are they not held responsible for its effects on humanity. This argument can be reduced to something as simple as a dog biting someone. How do we know who is responsible? Is it the fault of person being bit for getting in the dogs way, like someone exposing themselves to UV rays? Or is it the owner of the dog’s fault, for not paying more attention to what their dog is doing? This is a fundamental question that reaches to the core of many of society’s problems and someone must be held accountable.

Works Cited

Benowitz, Steve. “European Groups Oppose Myriad’s Latest Patent on BRCA1.” Journal of the National Cancer Institute 95 (2003): 8-9

Hylton, Wil S. “Who Owns This Body?” Speculations An Anthology for Reading, Writing, and Research. Landrum, Jason, Matthew Wynn Sivils, and Constance Squires, eds. Dubuque, Kendall/Hunt, 2003. 107-24.

Tebo, Margaret Graham. “The Big Gene Profit Machine.” ABA Journal 87 (2001): 46-52.

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