Volume 17

Are Human Genes Patentable?

By Taskeen Ahmed

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Image Credit: Nogas1974, via Wikimedia Commons

Ever since the Human Genome Project was able to sequence the entirety of the human genome in 2003, genetics has been at the forefront of biomedical research. With this discovery came a multitude of new opportunities, including the arguably most paramount, cancer research, diagnosis and treatment.[1] However, the capitalistic nature of our country soon began to overshadow the possible medical breakthroughs the new innovation could have inspired. Consequently, companies began claiming patents on individual genes, based solely on the notion that they were able to isolate them from the genome. What exactly did this entail? The patent-holder would not allow other companies to conduct research on the gene(s), nor would it allow for testing of patients without approval. As a result, companies essentially began creating monopolies over genes or sequences of genes, making this scientific breakthrough yet another source of expanding consumerism. Tania Simoncelli, science advisor at American Civil Liberties Union (ACLU), shares a compelling argument against patenting of the human genome, using various rhetorical devices to support her point.

Simonelli first highlights the significance of the issue, using a prime example of a company using patents to monopolize the world of research. She introduces is Myriad Genetics, a company that holds a patent on both the BRCA-1 and BRCA-2 genes, both of which are known as origins of breast cancer and play key roles in breast cancer research.[2] As a result of this patent, Myriad was able to force other labs to stop BRCA testing, raise the price of its test to above $3000, stop sharing its research and data with the public, and finally, refuse to update testing. Not only does this prevent patients from getting accurate tests at reasonable prices, but it also prevents advances in medical research towards a cure for breast cancer.[3] It is evident that the fight against patents is significant and necessary; thus, it is important to look into the tactics Simoncelli uses when arguing for justice.

When discussing an issue that combines science and civil rights, the importance of civil rights is often minimized when the reader spends most of his or her time understanding the scientific aspect of the issue. But, Simonelli is able to conquer this issue by appealing to the audience's sense of sympathy, through the use of pathos. After explaining the many issues with allowing companies to patent genes, she demonstrates the implications of this issue using an anecdote about a ten-year-old young girl named Abigail. Abigail suffered from a serious genetic heart condition that could be fatal if left untreated. However, the test she needed to be diagnosed was unavailable because the patent-holder of the gene at question went bankrupt and refused to release the rights. After two years of undiagnosed suffering, Abigail unfortunately passed away.[4] With this example, Simonelli makes it clear that this practice has disastrous effects on the American public. The use of a ten-year-old child especially evokes feelings of compassion and sorrow. By telling this story, Simonelli creates an emotional connection between the issue at question and the audience, further convincing them of the issues that accompany patents on human genes.

In addition to the emotional appeal, Simonelli triggers the audience's sense of ethos by highlighting key figures in the genetic world that supported her argument against patentable genes. She generically refers to geneticists as well as medical, patient advocacy, environmental, and religious organizations, all of whom dedicated large amounts of their time to promoting her case. Specifically, she talks about "the co-discoverer of DNA himself, James Watson," who "referred to gene patenting as 'lunacy.'"[5] In an issue surrounding genes, which are fragments of DNA, an individual who had a key role in discovering DNA undoubtedly holds authority. She establishes this authority by identifying his role as a "co-discoverer of DNA" and uses his scholarly opinion to support her argument. This further convinces the audience of Simonelli's argument, as it is not just her, but also the co-discoverer of DNA that holds this standpoint.

Finally, to completely substantiate her argument, Simonelli uses a method that is included in nearly every scientific debate: logos. Interestingly, though, she differentiates her use of factual information from others by again using pathos to support her the facts. As mentioned earlier, some companies that held patents on genes, including Myriad Genetics, refused to update their testing with new research. The result of this practice, as Simonelli shares, is that over several years, "twelve percent of women undergoing testing received the wrong answer -- a negative test that should have been positive."[6] The use of this factual evidence shows how widespread the negative effects of patentable genes are. By sharing this data, she is capitalizing upon the many lives and families that were dangerously affected by a company's selfish desire to make money.

If the alarming statistic did not resonate with the audience, Simonelli further underscores this specific point by discussing the example of Kathleen Maxian. Kathleen's sister Eileen received a false negative test, from Myriad Genetics, for the BRCA gene, meaning that cancer did not run in the family. For this reason, Kathleen did not find it necessary to be tested for cancer at all. However, after being diagnosed with advanced-stage ovarian cancer two years later, the family had discovered that Eileen had received a misdiagnosis, and cancer was indeed in the family.[7] After recounting the devastating story, Simonelli points out that accurate test results could have prevented Kathleen's cancer from progressing so far, or from even progressing at all.[8] Her use of this story not only elicits from the audience feelings of sympathy, but also triggers outrage and resentment for the company that caused this family to suffer. By using both logos and pathos, not only does Simonelli provide the audience with a concrete fact, but she also tells a riveting story to uphold and authenticate the facts.

Simonelli and her colleagues at ACLU were able to take their powerful case to the Supreme Court. With the help of the commanding rhetoric, including the use of concrete facts, emotional stories, and references to authority, they were able to obtain an unanimous vote against patentable human genes.[9] Patients are finally able to get testing done at reasonable prices with accurate results, and there are no monopolies holding back new scientific breakthroughs. Simonelli accredits the incredible triumph to the continuous sense of teamwork and dedication. While I do agree that perseverance and cooperation are key to an impressive case, it is rhetoric that provides the basis for this, and any successful argument.

[1] "All About the Human Genome Project (HGP)," National Human Genome Research Institute, last modified October 1, 2015, http://www.genome.gov/10001772.

[2] TED. "Should you be able to patent a human gene? | Tania Simoncelli," YouTube, February 2016, https://www.youtube.com/watch?v=r_xV-M0KPo0.

[3] Ibid.

[4] Ibid.

[5] Ibid.

[6] Ibid.

[7] Ibid.

[8] Ibid.

[9] Ibid.