Notions of Genetic Discrimination, Genetic Determinism, and a Utilitarian Comparison - Term Paper Example

Notions of Genetic Discrimination, Genetic Determinism, and a Utilitarian Comparison Portrayals of scientific fact in the mainstream media are, to most scientists, for the most part inaccurate descriptions of legitimate research methods. One aspect of scientific research that the media commonly misrepresents is that related to genetic research. For instance, a study may be published associating on average a specific gene with a certain quantifiable behavior. The media, upon receiving word of this research, will change the wording of the story in order to sensationalize and sell the story as newsworthy, often relying on words like “cause”. Over time, the public has started to perceive “genes” as the causal determinants of our actions, our lives, and our decisions. This view, called “genetic determinism”, lies at the root of many fears about the specter of “genetic discrimination”, which many believe is on the horizon for developed countries where genome maps are becoming increasingly cheap. Nevertheless, it is not clear whether genetic discrimination will grow to become the problem many are forecasting. From an ethical perspective, the problem of genetic discrimination may not lie solely in the act of discriminating against an individual based on his or her genome; rather, the problem may lie in people’s fears about a genetic bias, which may cause some not to seek a diagnosis. Utilitarianism: The Ethical Foundation Utilitarianism is the ethical theory that the moral content of an act (or rule) consists solely of the degree to which it maximizes happiness (or utility) in the greatest number of people. In other words, the good toward which all of our actions ought to pursue, under the utilitarian theory, is happiness, pleasure, or preference-satisfaction. Accordingly, if by ending the life of one person we save the life of twenty persons, then that act is not only allowable but also preferred under the utilitarian theory. Utilitarianism does have intuitive appeal insofar as any living being will seek to maximize its pleasure and minimize its pain. This moral theory acknowledges this fact and places happiness as the good toward which we evaluate all actions as either moral or immoral. The Utilitarian Argument against Discrimination Under a utilitarian framework, the argument against discrimination in any context follows from the assumption that society will be better off, or enriched, by the contributions of as many people as possible. Thus, if people were to be discriminated against in some fashion, their contributions to society (and ideas on how to make society better) would be lost without an audience. Therefore, as the argument goes, it is wrong to discriminate against people without looking at their character or actions. Utilitarians believe that policies like affirmative action, which are aimed at producing an equal society, are good in that they produce the most happiness for the highest number of people, primarily for the reason given above. However, if this equality lowered the overall good of society, utilitarians would immediately change their mind with respect to the equality-building measures. Likewise, in the case of genetic discrimination, utilitarians usually adopt legislation and other measures to counter the effects of discriminatory practices; nevertheless, if it were to be proven that equality-building attempts (such as banning mandatory genetic testing for new employees) hurt society, utilitarians would be obligated to change their opinions with respect to that situation. The Nature of Genetic Discrimination Genetic discrimination relates to making decisions because of genetic information when it comes to any aspect of employment, including hiring, firing, pay, job assignments, promotions, layoffs, training, fringe benefits, or any other term or condition of employment (EEOC, 2010). Employers cannot utilize genetic information to make an employment decision because genetic information does not tell the employer anything about someone’s current ability to work. Likewise, genetic discrimination may be employed by insurance providers that refuse to insure a person based on information gained from a genetic test, which may indicate a proclivity to genetically linked disorders. The Fallacy of Genetic Determinism As discussed previously, the common view of “genes” as propagated by the mainstream media suggests that our genetic code takes on a causal role in individual behaviors and actions. Scientists familiar with genetic research know this is not the case, which means that businesses and insurers that consult with experts on the meaning of genetic sequencing also know this. Genetic determinism is unmistakably false. Nevertheless, when a gene linked to cancer in one’s later life is found within an individual’s cells, it is treated as if a death sentence and an insurance liability. As Miller (2007) writes, “Most genetic markers cannot predict that an individual will get sick, only that there is a greater likelihood that he or she will actually fall ill” (p. 48). For this reason, the results of genetic testing of individual persons are likely to be misrepresented and misunderstood by those who have control of the information. Genetic Discrimination in the Workplace Genetic discrimination in the workplace may manifest itself in any number of ways, including firing, demoting, harassing, or otherwise “retaliating” against an applicant or employee for filing a charge of discrimination, participating in a discrimination proceeding (such as an investigation or lawsuit), or otherwise opposing discrimination (EEOC, 2010). These acts are all illegal under penalty of federal law under Title II of the Genetic Information Nondiscrimination Act of 2008 (GINA). In addition, the law forbids discrimination based on genetic information when it comes to any aspect of employment, including hiring, firing, pay, job assignments, promotions, layoffs, training, fringe benefits, or any other term or condition of employment. The intent of this legislation is to avoid discriminatory practices like those seen levied against members of protected classes like race, sex, and disability in the past. Additionally, by banning genetic discrimination in the workplace, the workplace is open to those who may be excluded based on the public’s misinterpretation of genetic tests. Genetic Discrimination in Insurance For the purposes of insurance, genetic tests may provide an insurance provider the advantage of adjusting prices for their services based on the projected likelihood of that insurance recipient developing the potential disorders identified in their genomes. This would allow insurance companies to make better business decisions on who they extend services to, but recent bans on insurance companies from collecting genetic information from their customers make the process of denying coverage based simply on genetics an illegal practice. However, the idea of insurance is to protect against the unexpected or unlikely. Forbidding insurers to take predictable risks into account when choosing whom to insure and how much to charge is asking them to behave irrationally and make bets they are sure to lose. Not insuring people who are likely to get cancer, or charging them more, is not evil. I it is fundamentally rational (Kinsley, 2008). The Illegality of Genetic Discrimination Miller (2007) analyzes the Civil Rights Model for accounting for the illegality of genetic discrimination. He cites the Americans with Disabilities Act, which covers Americans against discrimination based on a manifested disability. However, in the case of genetic discrimination, the act of discriminating against individuals is done based on potential disorders and diseases. To fill that void, the Genetic Information Nondiscrimination Act of 2008 was passed to ban the use of genetic tests for both insurers and employers. By making all instances of genetic discrimination illegal, politicians demonstrated a commitment to equality and a belief in the utilitarian argument against genetic discrimination. Regardless, there is reason to doubt the validity of the utilitarian argument against genetic discrimination in particular: with particular emphasis on the assumption that allowing people who would be discriminated against without that law to not be discriminated against is in the best interests of society. It may very well be the case that these individuals will, at some future time, detract from the majority’s happiness. The Rarity of Genetic Discrimination Although there is strong media coverage of cases of genetic discrimination, and there seems to be a number of anecdotal cases of discrimination, empirical evidence suggests that our exposure to such cases is overestimated. As Miller (2007) writes, “It is difficult to know precisely how prevalent is the use of genetic testing in the workplace” (p. 48). As a result, it is also difficult to know precisely how prevalent the use of genetic testing to make employment decisions is, regardless of the legislation recently passed by the federal government. Because these numbers are not available, it makes sense that cases of genetic discrimination are rare enough that the net impact of such discrimination may not necessarily be negative for society as a whole. In fact, the utilitarian problem with genetic discrimination may not be with the effect of genetic discrimination itself: it may consist of the problems that result from fear of genetic tests, born out of the culture of fear, which has sprouted up around notions of genetic discrimination. This fear produces the genetic discrimination paradox. The Genetic Discrimination Paradox Although genetic testing in the workplace and for insurance purposes is exceedingly rare, people are hesitant to seek genetic diagnoses and genetic tests that may, in the end, improve their health because of fears spread around the existence of genetic discrimination. People believe that by submitting to a genetic test, that their private information will fall into the wrong hands and be used in illegal ways to deprive them of their employment, insurance, and other services. This irrational fear is actually working to diffuse the positive effects of genetic testing for society. As a result, a situation undesirable from a utilitarian perspective is developing: although the practice itself does not cause suffering, it is the fear of the process that, left unchecked, will eventually destroy its beneficial usefulness. Legislation that bans genetic discrimination, although symbolically meaningful, may contribute to the public’s fears. As an example, individuals who suspect a genetic history of a disease or disorder in their family may be hesitant to seek genetic testing for such a disorder, like Huntington’s disease. In 2008, a family sat afraid that if they submitted to a test, and discovered the result, that the genetic information that resulted might be used in unfavorable ways. “They really didn't feel safe having the test; there were too many worries about who could get the information to use it against them — or against their children, who might or might not later prove to have the gene” (Collins, 2008). From the utilitarian perspective, this fear interferes with families’ abilities to plan for their future, produces unhappiness, and thus is an undesirable outcome. Conclusions The more desirable outcome is for a better-informed society to understand the science behind genetic testing and understand that, although genetic tests were practically useful for most employers and insurance providers for many years before the advent of genetic discrimination legislation, cases of genetic discrimination are exceedingly rare. This is because businesses and insurance corporations, in concert with scientists, understand that genetic determinism is a fallacy: just because a person has a gene linked with a disorder like cancer does not necessarily mean that person will develop and die from cancer. Genes are not the causal determinants of our behaviors and our decisions. For that reason, the public needs to understand better genetic testing and genetic technology if only to avoid the undesirable outcome of completely shunning the technology, which has tremendous potential for good if used properly. What ought to scare us all is that scenario: when fears of genetic discrimination make the use of genetic technologies obsolete, simply because no one will submit to them. Compared to the rare case of genetic discrimination, that outcome is much more daunting. Works Cited Collins, L. (2008, June 5). Specter of genetic bias makes it scary to seek diagnosis. Retrieved February 10, 2010, from Deseret News: http://www.deseretnews.com/article/700231861/Specter-of-genetic-bias-makes-it-scary-to-seek-diagnosis.html EEOC. (2010, January). Genetic Information Discrimination. Retrieved February 2010, from U.S. Equal Employment Opportunity Commission: http://www.eeoc.gov/laws/types/genetic.cfm Kinsley, M. (2008, May 8). Genetic Discrimination: Unfair or Natural? Retrieved February 10, 2010, from TIME: http://www.time.com/time/magazine/article/0,9171,1738513,00.html Miller, P. (2007). Genetic testing and the future of disability insurance: Thinking about discrimination in the genetic age. The Journal of Law, Medicine & Ethics, 35, 47-51. Read More