¶ … cheap genomic sequencing has widespread and unforeseen cultural, political, and societal implications that have only just begun to reverberate through the human population at large. Genomic sequencing not only reveals some of the causes and connections behind certain diseases or disorders, but also puts the lie to certain forms of bigotry which assumed that dramatic phenotypic differences represented a similarly dramatic genetic or biological difference (put another way, genome sequencing reveals just how little skin color says about a person). The implications of full genome sequencing can largely be broken down into a few distinct but related categories, including healthcare, notions of race and ethnicity, and social and criminal justice. Examining the use of genetic information with an eye to these categories reveals not only the implications of genomic sequencing for society at large, but also how it may affect minorities and those wishing to protect their right to maintain control over their biological information.
The first step towards ushering in the new age of personal genome sequencing came with the first attempt at sequencing the human genome via the Human Genome Project, and "on June 26, 2000, Francis Collins, Director of the National Human Genome Research Institute, and J. Craig Venter, President of Celera Genomics, Inc. announced triumphantly that a draft of the human genome sequence had been assembled" (Mitchell & Happe, 2001, p. 375). At the time, the assumption was that the sequencing of the human genome would rapidly lead to genetically specific personalized medicine, allowing doctors and patients to have advance knowledge of any complications or disorders that might arise due to the predictive power and individual choice offered by the sequenced genome. This has led to "a growing number of companies [offering] applied genetic technologies over the Internet directly to consumers," with a special focus on "cancer risk assessment, hemochromatosis, cystic fibrosis, and other genetic disease," despite the fact that many of the social and legal questions surrounding genetic information has yet to be decided (Majdik, 2009, p. 571-572). Thus, this proposed golden age of medicine has yet to arrive for a number of reasons, with perhaps the most important reason aside from cost being that the standards for exactly who should control and have access to the personal genetic information of any given person is not entirely clear.
Unlike previous forms of medical information, like X-rays, MRIs, and dental records, genetic information can not only identify an individual, but also serve to predict the likelihood that he or she will develop any given disease or disorder. While this information is undoubtedly useful for medical professionals attempting to provide their patients with the most effective care, it could also be used by insurance companies as a way of determining eligibility and costs, or by employers to determine whether or not it is worthwhile to promote a given employee, based on his or her life expectancy or likelihood of developing a disease. Furthermore, "the ramifications of genomic research can ripple quickly throughout human populations, with potentially dire consequences for social groups linked to the individual human research subjects who donate tissue samples," because if one person gives consent for his or her genomic information to be used as part of medical research, he or she is also implicitly giving away genetic information about anyone even remotely related to him or her ((Mitchell & Happe, 2001, p. 376). Thus, the potential for abuse of genetic information by companies and governments is obvious, so despite the desire of commercial entities or law enforcement agencies to maintain databases of personalized genetic information, the only way to gain the benefits of genetic sequencing without the pitfalls is to ensure that individuals retain ultimate control over their genetic information.
By maintaining strict rules which place personalized genetic information in the hands of the individual, society will be able to reap the benefits of personalized and predictive medicine without suffering the consequences that would arise should any corporate or governmental agency retained control of this information. This means that not only should individuals retain the sole rights to their genetic information, something which is not the case with other medical test results such as X-rays or MRIs, but they should also be allowed to delete or otherwise reclaim any genetic information they give...
Perhaps more so than any other piece of personal information, personalized genetic information requires that a well-maintained chain of custody be instituted with the individual whose genetic code is under consideration retaining ultimate authority over who has access to it. In order to see why this must be the case, one may examine not only those instances where genetic information may be abused or used as a means of coercion, as in the case of minorities or the disabled, but also a potential future where genetic engineering becomes the newest phenomena separating the rich from the poor.
The sequencing of an individual's genome, and the human population at large, has some of the most obvious and dramatic implications for minority groups, because quite simply any information gleaned from genetic information could be used to reinforce old bigotries or start new ones, even while genetic information reveals just how similar human beings are, and how little preconceived notions of race, gender, or sexuality actually matter on the genetic level. Put another way, detailed genetic information reveals that those attributes which humans have historically chosen to categorize themselves by actually bears little resemblance to the diversity seen in the genetic code, and furthermore, that there are likely more legitimate genetic differences between any two members of a previously constructed social group than between any two members of the given population.
However, this is not to suggest that widespread genomic sequencing will result in the abolition of bigotry, but rather that the attributes latched on to by bigots as a sign of difference or inferiority will change from the phenotypic to the genomic, such that "the unsettled heuristics of population genetics have the potential to alter the political landscape of [America] and elsewhere with no less force than the Jim Crow laws implemented just about one century ago" (Stevens, 2003, p. 1034). The ethical quandaries this presents has of course been thoroughly explored in science fiction, but the potential reality of it has only recently been considered (Acem, 2007, p. 232). The need to maintain control over one's genetic information is all the more important for minority groups, not only because they have traditionally been targeted for undue law enforcement attention and predatory commercial enterprises, but also because the minority groups of the future will likely arise specifically because of that genetic information, rather than the more obvious categories of race, gender, or sexuality. Nonetheless, experience dealing with bigotries born out of these differences can actually help to forestall some of this seemingly imminent discrimination, and a look at theoretical and critical tools for dealing with the disabled, and specifically the implications of their genetic information, will demonstrate this.
As mentioned previously, the oppressed minority groups of a future in which individuals do not maintain complete control over their genetic information will likely be ostracized according to certain genetic markers, rather than the more obvious phenotypic distinctions. Because "geneticists may soon be able to hand prospective parents a list of genetic conditions/predispositions present in a given fetus at a very early stage in pregnancy" and "parents will then be asked (and encouraged) to consider what level of disease/disability is acceptable and manageable for them and their families," the notion of disability will take on an entirely new meaning, requiring news ways of thinking about health and diversity, especially because certain conditions, like high-functioning autism, may be more appropriately considered as representative of human cognitive diversity rather than a "disability (Patterson & Satz, 2002, p. 119). Thus, the role of the "genetic counselor" has evolved to function as a kind of intermediary between medical professionals and those making decisions based on their personalized genetic information.
"Haunted by the specter and history of eugenics, genetic counseling has been governed by the cardinal principle and moral imperative of nondirectiveness," seeking to inform individuals about the potential, both positive and negative, revealed in their genetic information without making any claims as to what is the "right" decision (Patterson & Satz, 2002, p. 119). However, while admirable, this attention to nondirectiveness will undoubtedly challenged in the near future, because…
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