By Samara Alazar, West Springfield High School, Springfield, Virginia, United States
Merely decades ago, groundbreaking scientific discussions concerning the ethics of genetically modifying embryos would have been unfathomable. Initially, the debate behind the genetic manipulation of an embryo grew in popularity in the late 20th century as medical technology advanced rapidly. However, the controversial experiment conducted by He Jiankui in China reignited this heated discussion when he genetically modified twins with a gene meant to make them less susceptible to HIV (Greshko, 2019). Currently, Pre-implantation Embryo Genetic Modification (PGM) is prohibited in the US, while Pre-implantation Genetic Diagnosis (PGD) is legal. PGD allows embryos to be tested for certain diseases to prevent mutated embryos from fertilizing. PGM has the potential to genetically manipulate an embryo in vitro, to then be transferred into a woman (Biol, 2016). The ethics and legality surrounding PGM and PGD are heavily debated, even beyond the medical community, because of the numerous problems or potential benefits that could arise from these practices. Nevertheless, genetic manipulation of an embryo, PGM, should remain illegal as it puts the baby's life at risk, further perpetuates misconceptions surrounding the disabled community, and creates more economic disparities in society.
Although the genetic manipulation of an embryo can have a catastrophic effect on society, some people support its legalization as it could possibly cure certain genetic diseases. By identifying a mutation within an embryo using PGD, scientists can insert normal genes into its defective nucleus to repair a mutation (“Gene Therapy, 2019''). Then, altered cells could “produce enough normal gene product for the entire body to be restored to the undiseased phenotype” (“Gene Therapy, 2019”). With this practice, PGM can potentially allow scientists to eradicate diseases, such as Huntington's, or disorders like Down Syndrome (Dresser, 2004). However, PGM advocates fail to acknowledge the risks of this procedure. Since PGM is performed on an in vitro embryo, “any harm caused by such treatment could be passed to successive generations'' (“Gene Therapy, 2019”). The risks of PGM will harm the baby with the mutated genes and their entire genetic lineage, thus revealing the possibly devastating effects that PGM can have within society.
The genetic modification of an embryo poses a significant risk to the life of the potential baby. Currently, CRISPR-Cas9 is the most widely used scientific technique that can genetically alter human embryos (Biol, 2016). However, even if CRISPR successfully alters the embryo's genes, new discoveries subtly unravel the problems regarding the modernity of this new technology. For example, studies from Nature Medicine discussed how “[scientists] found that cutting the genome with CRISPR-Cas9 induced the activation of p53” (Bengley, 2015). This activation can lead to disastrous mutations within the p53 gene which are infamously “responsible for nearly half of ovarian cancers, 43 percent of colorectal cancers, and 38 percent of lung cancers” (Bengley, 2015). This recent finding has concerned scientists regarding the legitimacy and safety of CRISPR-Cas9 and has forced them to take even greater precautions with this technology. Although these precautions potentially alleviate the concern that CRISPR-Cas9 causes the emergence of tumors, it also reveals how this scientific practice is too premature to be safely performed in humans.
Moreover, genetic modification continues to perpetuate the idea that all disabled people believe their disability must be “cured.” PGM would inescapably “[reflect] and [reinforce] societal assumptions that [a] disability is always harmful” (Benjamin, 2016). This misconstrued view of disabilities would inevitably lead to disabled people becoming more ostracized as the medical community continuously attempts to find ways to erase a significant part of their identity. As a result, people with disabilities will face even more widespread intolerance, on top of the “discriminatory practices among healthcare workers” and ableism already embedded into society, thus continuing to harm their mental and physical health (“Disability”, 2023). Another issue with the practice of PGM is that people without disabilities are often speaking for disabled people while disregarding their perspectives. This further highlights the importance of being, “attentive to social complexity, so that white middle-class patient advocates do not continue to serve as the default public to whom science and technology are accountable'' (Benjamin, 2016). If the goal of PGM was to improve the well-being of people with disabilities, why are they being excluded from the conversation? Why are they being overlooked when this practice affects them the most? Why are they being disregarded while scientists determine the future of their disability? Advocates of PGM are only interested in creating a society that is perfect in their eyes, which means harming an already underserved community.
Furthermore, genetic manipulation of an embryo causes further economic inequities and divisions. As stated above, a primary argument in support of legalizing PGM is that it can give embryos certain favorable traits. However, “as [scientists] develop the capacity to control disease and death, the benefits go disproportionately to those who already monopolize resources'' (Benjamin, 2016). The healthcare system heavily favors the wealthy, and by legalizing PGM, class inequality will continue to grow exponentially. Moreover, if PGM evolves to the point where scientists can manipulate embryos to acquire higher levels of intelligence or athleticism, only the rich will have access to these benefits. PGM will unavoidably create what is known as “genetic castes,” leading exclusively wealthier classes to acquire genetically advantageous traits while continuing the discrimination towards lower classes (Darnvosky, 2010). This potential outcome of PGM highlights the necessity of considering the broader societal implications of genetic modification before embracing it.
The possible detrimental effects of PGM, especially in developing countries, cause significant concerns within the global health community. While PGM can lead to the mitigation of infectious diseases that plague developing countries, the prevalence of the potential unethical effects on underdeveloped countries allows for significant global health discussions regarding its use (Pang, 2002). The clinical trial sites established as a result of the more widespread use of PGM will primarily preside in developing countries, thus raising serious global health concerns such as “informed consent, standard of care, and continuing availability of the drug being tested (Pang, 2002).” The continued exploitation of developing countries, which has led to a history of unconsented and unethical experimentation, can be foreseen by the added ubiquity of PGM. As previously mentioned, a significant global health discussion regarding PGM is the inevitable inequities it will cause between different social classes. Furthermore, PGM can lead to the creation of a “genetically engineered overclass and a disease-prone underclass (Pang, 2002).” This suggests that not only will any potential benefit of PGM not be available to impoverished communities, but the dangerous implications of PGM can leave poverty-stricken groups with harmful mutations and inadequate health care to address these concerns.
A prevalent problem within the medical community that leads to promoting PGM is that scientists often act with more certainty in their advanced methods without fully considering the risks. Numerous scientists and medical practitioners deceive the public by pretending that the full effects of genetic manipulation are discovered while the long-term impact of PGM remains unknown (Benjamin, 2016). This lack of transparency and hiding of potential risks of PGM from the public is dangerous and unethical. The medical community must stop hiding behind the guise of “informed consent” when “the best that researchers can really promise is a partially informed consent” (Benjamin, 2016). The inevitable, threatening effects of PGM must be prevented before it creates an unrecognizable society that will only continue to serve the privileged.
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