| Who Should Be Responsible For the Effects? Beth Merrifield Academic affiliation: Oklahoma State University �Read the copyright notice at the bottom of this page before reproducing this essay/webpage on paper, or electronically, or in any other form. | 
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. 
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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