Lovely Penguin

Dear Readers,
This page is a work in progress. Basically I’m using it as a place to store some of my academic writing for other academics to look at. Of course, anyone is welcome to read this- it’s just that not everyone may find it interesting.

So now my first post is up, but if you don’t feel like reading it, as it is long, you may look at this majestic giraffe I took this lovely photo of.

Cheers,

Marie

My first entry is not the essay I planned to post. It’s about how new genetic technology is redefining the term we generally refer to as “disability”.
Redefining Disability in the Face of Genetics

by R. Marie Gordon

To describe someone as “disabled” generally implies that the person has been either “incapacitated by illness or injury” or “physically or mentally impaired in a way that substantially limits activity especially in relation to employment or education” (“Disability” in Merriam-Webster’s Dictionary). While disagreements remain as to who actually qualifies as impaired or incapacitated, there is no doubt that the concept of disability has taken on greater significance in the modern world of genetic engineering. Questions raised by these new technologies include whether or not a person with a pre-existing genetic risk factor for a disease or for a mental disorder qualifies as disabled. Where do people draw the line between who is able and who is disabled? I argue that the concept of disability is shifting to a broader definition by which, in addition to classical physical disability, disability can also reside latently within a person’s pre-birth genetic makeup—i.e. a genome that has either a present problem or a certain amount of a statistical risk factor for disease which could occur during a person’s lifetime can qualify a person as disabled. I argue that the non-fiction accounts of disability described in two recent National Public Radio interviews reveal an ambiguity of terminology around genetic disease which indicates that the definition of disability is shifting to include risk factors for disease. Additionally the representation of disability in the fictional film Gattaca problematizes the issue of using statistics as a basis for disability as one that inherently functions to promote communitarian society.
Geneticists in three National Public Radio (NPR) interviews use a variety of terminology which describe an ambiguity that characterizes the new definition of ‘disability’. This terminology describes persons or embryos that have a predisposition for developing a disease. These persons or embryos geneticists refer in numerous ways. Geneticist Dagan Wells used the term “affected” to describe an embryo with a predisposition for a genetic disease within its genome (Palca). Wells noted that “genetic disorders” and “genetic problems” result from a “susceptibility gene” or a “genetic mutation” which causes “fatal disease” in a person (Palca). Wells uses several terms to describe genetic predispositions for disease, though he does not lump them all under the term disability. He does, however, use the terms interchangeably, as if somehow being “affected” and “susceptible” were the same thing: a means of being disabled (Palca). Wells implies that a predisposition for disease, a statistical risk factor, has become a disability, as opposed to simply defining disability as a current disease. PGD allows doctors to prevent disability by reducing the risk factors for genetic disease in an embryo, be it disease that would immediately affect an embryo or that would occur later on in life. In another NPR interview, reporter Michele Norris spoke with the director of the Bioethics and American Democracy Program at the Ethics and Public Policy Center in Washington, D.C., Eric Cohen. Cohen spoke of parents’ desire to “avoid disability” and “avoid disease” in their children, also using the terms disease and disability interchangeably (Norris). The current way to “avoid terrible childhood disease”, Cohen says, is through the practice of Preimplantation genetic diagnosis (PGD) in which parents pick only embryos who are not “afflicted” in order to avoid having a child with a disability such as Down Syndrome (Norris). These geneticists’ ambiguity of terminology signifies the shifting definition of disability.
When pursued to its logical extent, the PGD technology discussed in these NPR interviews can lead to the kind of society portrayed in the futuristic sci-fi film Gattaca. In this film, the majority of individuals have been genetically engineered, and those who are not, are the disabled. Among these disabled, or natural born, individuals is Vincent, who assumes the identity of the genetically superior Jerome in order to become an astronaut. Despite the fact that Jerome has been paralyzed by an accident, citizens in this society consider Jerome’s case of disability an anomaly rather than the norm. For example, the man who arranges for Vincent to take Jerome’s identity speaks of Jerome’s physical capabilities in the present tense, when he says that Jerome “has the heart of an ox” (Niccol). After he says this the man hesitantly recognizes Jerome’s disability, telling Vincent that Jerome “could run through a Goddamn wall–if he could still run” (Niccol). What happened to Jerome happens so rarely in the world of Gattaca that neither the man nor Jerome readily admits Jerome has a disability because he was normal before the accident. By today’s standards, Jerome is the only example of classical physical disability in the film. An unlikely occurrence in Gattacan society, Jerome’s physical disability which renders him housebound allows Vincent to assume Jerome’s genetic identity. Jerome’s genes give Vincent the superior genetic profile required to work in Gattaca. Despite all this, in Gattaca Vincent is the person with the disability because of his inferior genome, one of a natural born child. Vincent is merely passing for his genetically superior friend Jerome. In fact if it were not for Vincent’s natural intelligence and attractiveness he could not have passed at all for a genetically engineered person.
In Gattaca genome disabilities have extended to the range of physical and mental traits beyond genetic susceptibility toward disease. Any genetic flaw is a disability, a condition which predetermines a person’s possible roles in life. Vincent explains, “Anybody with impaired vision is certain to be suffering from all the other deficiencies of a “nonadvantaged” birth” (Niccol). Gattacan society has taken the PGD process to an extreme. The majority of parents in this society opt to eliminate risks for not only genetic disease but also any physical abnormality. Parents choose to have their children standardized to norms of beauty, athleticism, intelligence, and in a variety of other customizable ways. For example, the pianist Irene and Vincent see at a bar has six fingers. Irene notes about the piece he is playing “that piece the pianist plays can only be played with six fingers” (Niccol). On the other hand, parents who chose not to use PGD, like Vincent’s parents, take the risk of allowing their child to have any number of physical or mental impairments in addition to genetic disease. It is because of Vincent’s parents’ choice to not use PGD that Vincent has high risk for having a learning disability. The normal traits that Vincent has such as his looks and his intellectual capabilities, Gattacan society sees as the result of pure luck. Furthermore, because of Vincent’s natural birth he runs the risk of contracting any number of genetic diseases which could diminish Vincent’s capabilities. Natural skill, beauty intelligence are all ephemeral traits in natural born people in Gattaca; these traits do not diminish a person’s disabled status because the natural genome could have any number of defects such as risk factors for disease that threaten to destroy these capabilities. Natural birth, regardless of the capabilities of a child born this way, disables a person such as Vincent because it leaves open the possibility of genetic defects later on in life. Any slight genetic impairment in Gattaca can brands a person like Vincent disabled.
What I find most significant about Gattaca is its implications for the future of genetic engineering in society today including the use of statistics to define disability and the impact of this practice, which threatens to break down individualism in Western society in favor of communitarian statistical logic. As mentioned earlier, Vincent’s statistical risk factors for disease, in his case specifically, a 99% chance of having a heart attack before age thirty qualify him as disabled (Niccol). The benefit of this statistical measurement in Gattaca is that society does not invest time and resources into educating and training people with high risk factors for physical or mental disease, to be members of the social and economic elite. In Jerome’s case, for example, his superior genome allows him to become a member of the space program. Jerome’s genome qualifies him to work in Gattaca where he makes a significant salary and contributes to the Gattacan space program, a project to which society attributes remarkable importance. As a consequence, for those born without PGD, the term disabled functions to discriminate against natural born persons by reducing them to both a lower economic and social level. Society expects that Vincent will accept his genetic destiny, and contribute to the ‘greater good’ by sacrificing himself to the ranks of low socio-economic status. Vincent’s voiceover, in which he recalls his childhood and the circumstances under which natural born children live, exemplifies the shift in the definition of disability to one which focuses on the genome, rather than on the physical characteristics of a person or their ability to contribute to society.
“My genetic scarlet letter continued to follow me from school to school. When you’re told you’re prone to learning disabilities, it’s sometimes easier not to disappoint anybody. We glimpse at other people in the neighborhood. They appear poor but, for the most part, physically normal. However a pall of gloom hangs over them. Officially they are called “In-Valids”. Also known as “godchildren”, “men-of-god”, “faith births”, “blackjack births”, “deficients”, “defectives”,”genojunk”, “ge-gnomes”, “the fucked-up people’” (Niccol).

The cataloging of derogatory terms at the end of this quote exemplifies the discrimination of the disabled in Gattaca. This quote also expresses how Vincent doesn’t want to disappoint anyone by surpassing his statistically predicted genetic capabilities. This notion reflects the communitarian system which has produced Vincent. Vincent’s genome discriminates against him and has scarred him. The predicted capacity of this genome could never explain how he manages to pass as the genetically and socially superior Jerome who tells Vincent “It’s not easy living up to this” (Niccol). Part of being a member of society in Gattaca, is living up to your genetic potential, or in some cases simply accepting it, for the good of greater society. Nevertheless, the statistics fail Vincent. He lives past thirty despite predictions and despite his learning disability he has no problem passing as a genetically superior individual in his work. Society has denies the possibility that Vincent or any other natural birth individual could defy the odds of his/her statistical genetic potential in favor of a system which has the greatest cost/benefit potential—one based on statistical predictions rather than outcomes.
The idea of statistical probability seems curious as a means of defining disability, one that inherently relies on unstable comparisons for stability. Whereas fixed comparisons of physical capability remain constant in today’s society, the comparisons of genetic capability in Gattaca center on uncertain risk factor percentages. Using a low percentage of risk of one person to define the norm, becomes complicated when those statistical probabilities don’t play out as expected—as in Jerome’s case where an accident renders him paraplegic or in Vincent’s where his high risk for learning disorder and heart disease never materialized into intellectual or physical problems. What percentage of risk defines disability? If someone has a 5% risk of heart attack in Gattaca, society may not consider that person disabled. Yet, Vincent defies the 99% odds that he will have a heart attack. Vincent, regardless of what odds he defies, is disabled. It seems paradoxical, to define someone as disabled who has defied the odds of their statistical genetic profile, and yet this is the case in Gattaca. He says at one point in the film that he is more than 10,000 beats [heartbeats] overdue to die (Gattaca). Life in Gattaca has turned into a waiting game for those statistically predicted to die at a certain time, waiting for their genes to kick in. Instead of accepting the possibility that people can defy statistics, the statistics in Gattaca define the people. Those with high statistical risk of a disease are already disabled before birth. The question is, is it right to have a society that uses statistical probability to define disability especially when pre-birth statistics do not always predict the actual outcome of the person?
To explore this question of the ethics of using statistics to define disability, I point to how the disabled term functions to discriminate persons in Gattaca. This label reduces natural born persons to both a different economic and social level and elevates PGD persons to a higher social class and standard of living. When Vincent goes to get a job with Jerome’s DNA on hand, his interview consists of a DNA test alone. The disability definition in Gattaca works to redefine social and economic boundaries. The genetically ‘superior’ in Gattaca treat the ‘invalids’ like thugs—the police round them up and beat them during the investigation into the murder in the Gattaca building. The function of redefining disability in Gattaca is to discriminate against those with non-genetically-engineered genomes.
Through the discrimination of disabled persons in the film and the valuation of PGD born citizens, Gattaca forms an implicit argument against communitarian society. The hero of the film, Vincent, proves wrong the idea that natural born people cannot live up to those born by PGD. When Vincent challenges his brother to see who can swim out farthest in the ocean, after many failures, Vincent finally wins; this victory motivates Vincent to surpass the limited expectations which Gattacan society has put on his natural birth genome. Vincent manages to deceive a system which values PGD persons over the natural born invalids. With Jerome’s help Vincent triumphs over a society which has discriminated against him on the basis of his genome. Furthermore, director Andrew Niccol demonizes the communitarian society in Gattaca, to which the investigators and the majority of PGD individuals (with the exception of Irene) belong. The one investigator becomes convinced that the person who owns the traces of invalid DNA left at the crime scene must be the murderer. Even when another investigator rules this possibility out the investigator adamantly refuses to stop chasing down this invalid, Vincent. The investigation torments Vincent as he constantly has to run from investigators and prepare blood and urine for tests which the investigators conduct in Gattaca. The investigator no longer wants to prove a murder by the time he finds out that Vincent is the invalid who left the DNA trace; rather he is determined to put the invalid back in his place—a place outside of the superior workforce of Gattaca. The investigator is the enforcer of communitarian society, one which strictly segregates the PGD individuals from natural born persons. He serves not only as Vincent’s foe, but as an embodiment of the evil of de-individualizing society.
The communitarian society in Gattaca specifically contrasts with the individualist society in which geneticists perform current PGD procedures. Geneticists use PGD procedures, as parents in the NPR interviews expressed, to alter a variety of traits from disease risk factors to the gender of an embryo. While today’s individualistic society focuses on the benefits for the individual child in the case of genetic disease prevention with PGD, the focus of gender selection tends toward communitarian benefits—such as the family who expressed the need to have a son to support them in their old age, or the mother who wants to have a daughter in order to have the mother-daughter experience with that daughter through certain activities such as shopping with that daughter (Palca, Norris). Nevertheless, if the number of parents who can afford to take advantage of PGD technology increases, simply through disease-prevention a tendency toward homogeneity could arise, even if this is a ‘positive’ change. By this, I mean that if there are no children born at risk for genetic disease, genetic diversity, still decreases and as parents opt less and less for natural birth , society could become more communitarian in the sense that it will be less willing to accommodate for persons born birth genetic risk factors for disease. Additionally, familial expectations, such as certain cultural norms that require a family, such as the Indian family in the NPR interviews, to have a male child could be less accepting of families who cannot afford or chose not to use PGD. Society’s diversity, as it happens in Gattaca, has the potential to decrease and tend toward genetic homogeneity as genetic diversity decreases through the increased use of the process of PGD.

Works Cited
“disability.” Merriam-Webster’s Medical Dictionary. Merriam-Webster, Inc.
15 Feb. 2007.
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Gattaca. Dir. Andrew Niccol. Perf. Ethan Hawke, Jude Law, Uma Thurman. DVD.
Columbia Pictures, 1997.
Niccol, Andrew. “Gattaca Script at IMSDb.” The Internet Movie Script Database. 1997.
Columbia Pictures Corporation and Jersey Films. 15 Feb 2007 .
Norris, Michele. “The Ethics of Embryonic Sex-Selection Treatments.” [Podcast 'entry']
Health and Science. 20 Dec 2006. NPR. 15 Feb 2007 .
Palca, Joe. “Screening Embryos for Disease.” [Podcast entry] Health and Science.
20 Dec 2006. NPR. 15 Feb 2007. .