Research-Informed Action Project - The Gene Patenting Controversy-
By: Mahnoor Shah
Teacher: Mr. Krstovic
Grade 10 Science
June 3, 2013
Introduction: The Issue of Gene Patenting
The activity of gene patenting has been present since the early 1980’s. Since this time, a total number of 3000 to 5000 human genes have been patented (Fisher, 2013). Generally, a patent is a type of license that gives an inventor exclusive rights to a product and, in turn, denies permission for the product to be sold by anyone other than the inventor/ or inventors (unless stated otherwise). One of the main issues with gene patenting lies in the idea that a gene is a discovery rather then an invention and therefore should not be patentable. In the case of Myriad Genetics, the company has exclusive rights to the BRCA (breast cancer susceptibility) genes that are linked to breast, ovarian, and many other cancers. Although they have special right towards the gene with respect to their patent, many other companies had to stop their research on the BRCA gene even though they have been conducting research on it since the 1990’s.
In general, women have a 12% chance of developing breast cancer some time in their lives; however, women carrying a mutation of either the BRCA1 or BRCA2 gene have about a 60% chance of receiving breast cancer (National Cancer Institute). In other words, women carrying this mutation will have about five times more of a chance of developing breast cancer. With this being said, a clear and evident contradiction with Myriad’s patent on the BRCA1 and BRCA2 genes surfaces. The advantages of Myriad Genetics having patents on both BRCA1 and BRCA2 genes include: Myriad’s five hundred million dollar debt is being paid off quicker as they start charging money for any research or diagnosis done using the BRACA1 and BRAC2 genes; and Myriad Genetics may indirectly control new studies, projects, and research.
There are clearly many disadvantages to patenting genes. The patenting of the BRCA genes has an impact on society as people are legally not allowed to be tested for the BRCA genes by anyone other then Myriad Genetics or companies that have purchased rights from Myriad to test for the genes. Many individuals may not be able to afford this test as it costs $3, 340 (De Vouge, 2013). As studies have shown, there is a 95% chance that the results of the test will come out negative; in this case, one of the options individuals have is to take a re-test which costs around $700 or one can receive a preventative surgery which is out of reach for many with respect to cost. Although Myriad only has patents on the man-made isolated copies of the BRCA genes, they claim that due to the fact that the natural occurring gene has the same genetic information as their copy, working on the natural gene is equivalent to working on their copy of it. This certainly raises eyebrows on this issues and begs the question: How can someone start to hold patents on parts of human body? Is this an ethical practice? Who is benefitted by this kind of work and how is disadvantaged? It may be argued that the disadvantages (particularly the ethical considerations) outweigh any benefits (primary in form of profits generated by Myriad). It is this position that is adopted in this research-informed action report.
As clearly stated through the advantages and disadvantages, it is evident that many contradictions and issues are formed as a results of Myriad Genetics patents on the BRCA1 and BRCA2 genes. Examples of some contradiction include the fact that many individuals can not afford the tests that Myriad offers; however, no other company is legally allowed to conduct tests on the genes; therefore, no other company is able to find a cheaper alternative for the individuals who can not afford the Myriad test. The focus of the correlational study in this research action report was to help determine whether there is a correlation between gender andhow they feel about the gene patenting issue and its many contradictions.
Study of the correlation between gender and level of awareness regarding the issue of gene patenting
Purpose
The main purpose of this study was to determine whether or not there was a correlation between gender (male vs. female) and their opinions and level of awareness on the issue of gene patenting, which has recently become popular globally through media and which has many effects the well-being of individuals and societies.
Hypothesis
It was predicted that the level of awareness about the issue of gene patenting for both boys and girls would be relatively low as it boys and girls in high school, especially those in Grades 9 and 10, have not studied this issue. Perhaps one could argue that girls may be more aware as BRCA genes are related to breast cancer, which is more predominant in women.
Procedure
A study including 60 subjects from Erindale Secondary School was conducted on June 3, 2013in order to accurately determine if there was a gender correlation and level awareness about a critical and contemporary issue of gene patenting. An equal number of males and females were surveyed at the school during lunch periods. The format of the study was a survey which included a series of questions asking the participants about their opinion on the issue (See Appendix for the survey). The participantsindicated if they were a male or a female and then read the questions and circled the answers which they felt are correct (in their opinion). The surreys were gathered; the responses were tallied and data was analyzed for any correlations.
Analysis of Results
The following graphs were developed from the data collected from the surveys to answer the
focus questions pertaining to the original research conducted at Erindale Secondary School.
Figure 1: Boys and girls opinions regarding Ms. Jolie’s decision regarding preventative breast cancer surgery.
Figure 2: Boys and girls opinion on whether companies that have patents on certain genes actually own a part of everyone’s genome.
Figure 3: Boys and girls opinion (aggress/disagree) on whether gene patenting is necessary to medical research and needed in the society
Figure 4: Boys and girls opinion on the question of: Is it right or wrong that Myriad is the only company that profits from the BRCA gene through testing due to the patent on the gene?
Discussion of Results
Firstly, Figure 1 shows that there is little to no correlation between gender and one’s agreement with Angelina Jolie’s preventative surgery. Eighty percent (80%) of females agreed with Angelina Jolie’s decision while 73% of boys also agreed. There is only a slight difference (7%) between the genders meaning both have relatively the same opinion. This answers one of our questions. A possible reason for the slight difference is that females feel more connected to Angelina Jolie and understand the circumstances and risks of breast cancer more than men (boys). Although research has shown that males with breast cancer and males carrying the BRCA gene mutation are becoming more prevalent in society (Adams, 2013).
Figure 2 shows some correlation between gender and one’s opinions on whether companies that have patents on certain genes actually own a part of everyone’s genome. Forty three (43%) of females believe that companies actually own their genes through patents while only 26% of males thought the same. This difference is more prominent for this question than for the last one. According to Myriad, they do not own the natural gene but instead the man-made copy that they make. The two are completely identical but they are not “extracting” the gene directly from a person (Common myths and facts about gene patents). Other sources argue that it doesn’t matter how the gene is found, it is still natural and not an invention (Why are gene patents controversial, 2013). Girls may see this as merely the same thing as more think that gene patenting means owning a person’s DNA. Girls may also be more strongly opinionated than boys when it comes to issues such as gene patenting due to past gender inequality. Girls may feel more strongly about having a corporation or person own or have a patent on a part of their body.
Furthermore, Figure 3 shows strong correlation between gender and opinions on the need for gene patenting in our society. Only 23% of boys believe that gene patenting is necessary in medical research and society, while 53% of girls thought the same. 30% is a large difference and shows the contrast in opinion between genders, thus a stronger correlation. The end of gene patenting could potentially sabotage the whole medical research field as there would be less motivation for people to do research and less money (Fisher, 2013). Girls may agree with this more as they may have become more interested in the issue due to the sudden publicity as it is known as more of a female issue. Men and boys may have a harder time believing this statement and agreeing with it as they do not personally connect as much to the controversial BRCA1 and BRCA2 genes which do raise their risk, but significantly less than any female.
Finally, Figure 4 depicts a very weak correlation between gender as both genders seem to have the same opinion. 70% of teenage girls surveyed believed that it is wrong that Myriad is the only company offering and profiting from testing while 73% of boys thought the same. That is only a 3% a difference. Also, the other 30% of girls and 27% of boys may agree with many other people in that Myriad spent $500 million dollars in research for this and deserves some profit ("Patents save lives" 2013). This data allows us to make the assumption that for this particular question, there is no gender correlation. This could be because everyone, regardless of gender believes that medical health and the wellbeing of others should always come before money. This counter-argues the past evidence found in the other graphs.
Overall, the evidence and data collected from our study shows that there is some correlation between gender and the overall level of awareness about the issue of gene patenting. Based on the results received from the survey/ study and our Internet based research, we decided to create aninformational film to make individuals were aware of the controversies surrounding gene patenting. The informational video was designed to work as sources of information for individuals who did not fully understand the issue of gene patenting, to share opinions about the issue, and to bring awareness to the issue. We also wrote a letter to the Canadian Breast Cancer Association, which is attached in then section with the other action-ready materials. This project was a tremendous learning experience for us and we have personally become engaged in this issue through our, hopefully, informative research and actions.
Action Materials – Raising Awareness Through Actions!
The following is the information video created to raise awareness about gene patenting controversy.
Letter to Canadian Breast Cancer Association (CBCA)
As another action, On June 11th, a letter was sent to CBCA, one powerful stakeholder, explaining to them their importance to us and our RIA Project.
Screenshot of Letter to CBCA
References:
Adams, M. (2013, May 20). Surgeons now cutting out healthy prostate glands of men who
carrybrca gene. Retrieved from mensurgeonsnow-cutting-out-healthy-prostate-glands-of-men-who-carry-brca-gene/
De Vouge, A.V (2013, April 15). Can you patent human genes?. abc News, Retrieved from abcnews.go.com/Politics/patent-human-genes/story?id=18942966
Fisher, D. F. (2013, April 22). The curious case of human gene patents. Forbes, Retrieved from
Franco, M. (n.d.). How gene patents work. Retrieved from
life/genetic/gene-patent2.htm
National Cancer Institute , Fact Sheet. (n.d.). Cancer risk and genetic testing. Retrieved from
website:
(n.d.). Common myths and facts about gene patents. Retrieved from Myriad website:
Patents save lives, aid innovation. (2013, April 14). USA Today, Retrieved from
Risk of breast and prostate cancer in men with mutations in brca1 or brca2. (n.d.). Retrieved
from
men-with-mutations-brca1-brca2/
Why are gene patents controversial?. (2013, April 15).The Economist, Retrieved from
genepatents-controversial
Appendix
Sample Survery
Gene Patenting StudyCircle whether you are a female or male
1) Angelina Jolie made the right choice getting tested for a gene mutation and receiving preventative surgery.
AGREE DISAGREE
2) Companies that have patents on genes actually own a part of everyone’s genes.
YES NO
3) Gene Patenting is necessary when it comes to medical research and is needed in society.
AGREE DISAGREE
4) It is right or wrong that Myriad is the only company that profits from the BRCA gene through testing due to
the patent on the gene.
RIGHT WRONG