Ethics of Gene Editing
Medicine is currently standing at the brink of a transformative era, being pushed forward by our generation’s rapid technological advancements. At the forefront of this wave is gene editing, a groundbreaking innovation which makes it possible to correct errors in DNA. While this concept once only seemed possible in the realm of science fiction, the discovery of CRISPR has allowed scientists to precisely modify genes within living organisms. While the potential benefits of gene editing seem endless, this technology is accompanied by many risks and ethical implications. As a neuroscience major who aspires to contribute to gene therapy research, I’ve delved deeply into this topic, and I have developed the belief that germline gene editing should be out of the question due largely to issues involving safety, consent, and the alarming historical echoes of eugenics.
Distinguishing between somatic and germline gene editing is crucial in understanding the implications of genetic interventions. Somatic gene therapies focus on modifying the DNA of an individual patient to treat a specific disease, with the changes being isolated to that person alone. On the other hand, germline editing alters all cells in a human embryo, with the changes being passed on to future generations (Cannon, 2019). Both approaches can be used for the same purpose of targeting genetic disease, however the appeal of germline editing is that it could achieve the goal of eliminating a genetic disorder from a family lineage.
Presently, the dangers of germline editing outweigh the benefits, which is why the US and many other countries have tight policy and regulatory restrictions on its use. Although I acknowledge that it could be beneficial if used with restraint, when in history have humans ever practiced restraint when presented with opportunities for power and scientific advancement? Illustrative examples include the development of nuclear weapons, the eugenics movement (DenHoed, 2016), and biotechnological experiments such as the Tuskegee Syphilis Study (Nix, 2023). The U.S.’s controversial past only scratches the surface of my reservations about germline editing. There are many specific ethical concerns that further support my stance, which I will go on to address.
A primary concern regarding germline editing has to do with safety. I do not believe the existing research sufficiently addresses the potential dangers and long-term consequences of germline editing. The studies that have been done involving CRISPR-Cas9 genome editing have repeatedly been shown to cause unintended mutations at the targeted section of DNA in early human embryos (Alanis-Lobato et al., 2021). Currently, our knowledge of the intricate complexities and interconnectedness of the human genome remains incomplete. Engaging in the manipulation of genetic material, especially when our understanding of it is far from comprehensive, seems not only premature but completely illogical. The existing research gaps cannot be overlooked, particularly considering the incapacity of human embryos to provide consent for treatments that carry such substantial dangers.
Informed consent involves a comprehensive understanding of the risks and benefits associated with any medical procedure or scientific study. It is a fundamental principle in medical ethics when dealing with human subjects. Obtaining informed consent for germline gene editing is a very complex endeavor, one that I would argue is impossible.
Individuals considering germline editing likely would not be able to fully grasp the long-term implications of permanently altering not just their own but the entirety of their lineages’ genetic makeup, as it is a difficult concept to realistically comprehend. Future generations will also be unable to provide consent to an intervention on their own genome. Traditionally, parents have likely all made treatment decisions on behalf of their children, as young children cannot give informed consent. However, unlike traditional treatments, genome editing introduces irreversible effects. It could be argued that decisions made to eliminate genetic disease are justified as these would clearly be in the best interest of the child. However, as pointed out earlier, the potential risks could make such an endeavor unsafe for the child. Furthermore, decisions involving genetic enhancement also raise concerns, as the traits that parents see as beneficial might condition a child’s future choices in unwanted ways.
As parents seek to mold their children’s traits to fit the perceived ideals of health, the potential consequences of germline editing extend beyond safety considerations. Taking into account historical trends in scientific innovation, it is unlikely that this technology would be accessible to all, leading to a situation in which only privileged individuals and specific socio-economic groups would benefit from its use. The application of germline editing for disease treatment could exacerbate existing disparities, with rates of certain diseases declining in wealthy, predominantly white populations while persisting or worsening in marginalized communities. Moreover, the prospect of genetic enhancement could perpetuate social inequalities tied to income, education, and occupation, as specific physical traits can significantly influence opportunities (Mestripieri et al. 2016).
Even if it were possible to make genome editing affordable and accessible, there is the issue of a deeply rooted mistrust in the healthcare system, arising from a history of discrimination in medicine. I’d think that even if genome editing were made an option for marginalized populations, they would be hesitant to trust its use, as the technology could be some form of eugenics in disguise.
Eugenics is defined as “a set of beliefs and practices that aim to improve the genetic quality of a human population”. This term carries a dark historical legacy marked by unethical practices and a disregard for individual autonomy. Transitioning to the discussion of genetic enhancement, I would argue that the intentional modification of the human genome to “improve” individuals feels uncomfortably close to eugenics. Germline gene editing very much has the potential to conceal discriminatory practices beneath the guise of scientific advancement. The pursuit of certain genetic enhancements would undoubtedly uphold societal norms and prejudices, and would lead to the creation of a genetic elite, reminiscent of past eugenic practices that favored specific groups.
Furthermore, it is possible that genetic modifications could be imposed on individuals without full understanding or voluntary consent, mirroring historical violations associated with genetic material. Consider the story of Henrietta Lacks: an African American woman whose cells were unknowingly used for scientific research without her or her family’s consent. This lack of consent resonates with the core issues of eugenics, which often involves coercive or involuntary practices aimed at shaping the genetic characteristics of populations. The parallels between the misuse of genetic technologies and the historical injustices of eugenics are extremely scary when considering the future of gene editing. Any sensible person would exercise caution regarding these aspects and advocate against unwarranted genetic manipulation.
Delving deeper into the ethical implications of germline editing, it is crucial to consider the consequences of employing this technology to eliminate all disabilities and diseases, a use that would be inevitable. There are obvious parallels between eugenics, characterized by the manipulation of genetic traits to conform to societal ideals, and using germline editing to exclusively generate humans deemed “normal” with only “good” genes. The construction of a population free from pain or imperfections raises unsettling questions about homogenization and a reduction in not only physical but mental diversity, mimicking eugenic practices.
A medical condition can become an integral component of a person’s identity, shaping their unique interaction with the world. A profound perspective is shared by a mother of a son with a disability, who expressed her unwillingness to “do anything that would take away him, take away who he is. And he is who he is partly because of the challenges he has faced” (Hafner, 2020). Eradicating the intrinsic aspects that contribute to individual uniqueness would lead to an unsettling uniformity within the population, introducing a shift in our understanding of humanity and individual identity.
Consider the legacies of artists such as Pablo Picasso, Frida Kahlo, and Vincent Van Gogh. Despite facing physical or mental health struggles, these individuals channeled their unique perspectives into their work, creating masterpieces that timelessly resonate with the human experience. Picasso’s unique Cubist style, Kahlo’s exploration of pain through self-portraits, and Van Gogh’s emotionally charged paintings all attest to the depth that emerges from personal challenges. Similarly, Stephen Hawking’s motor neuron disease shaped his life in a way that allowed him to make groundbreaking contributions to theoretical physics. His work became a testament to the human capacity to transcend limitations, serving as an inspiration not only to myself but also to countless others.
The list of individuals goes on, supporting my argument that in the pursuit of a genetically “normal” human population, there is no doubt that we would face the loss of diverse perspectives and the creative expressions that are born out of life’s challenges. As we contemplate a world where genetic attributes are predetermined, the very essence of what it means to be human — facing uncertainties, embracing imperfections, and accepting yourself for who you are — will be at stake.
While I acknowledge the remarkable potential of CRISPR and somatic gene editing technologies in advancing medicine, my unwavering stance asserts that germline editing should be avoided, considering the ethical, social, and philosophical aspects involved in shaping the genetic trajectory of humanity.
Works Cited Page
Alanis-Lobato, G., Zohren, J., McCarthy, A., Fogarty, N. M., Kubikova, N., Hardman, E., Greco, M., Wells, D., Turner, J. M., & Niakan, K. K. (2021). Frequent loss of heterozygosity in CRISPR-Cas9–edited early human embryos. Proceedings of the National Academy of Sciences, 118(22). https://doi.org/10.1073/pnas.2004832117
Cannon, W. (2019, January 9). Harvard researchers share views on future, ethics of gene editing. Harvard Gazette. https://news.harvard.edu/gazette/story/2019/01/perspectives-on-gene-editing/
DenHoed, A. (2016, April 27). The forgotten lessons of the american eugenics movement. The New Yorker. https://www.newyorker.com/books/page-turner/the-forgotten-lessons-of-the-american-eugenics-movement
Hafner, K. (2020, July 22). Once science fiction, gene editing is now a looming reality. The New York Times. https://www.nytimes.com/2020/07/22/style/crispr-gene-editing-ethics.html
Judge, T. A., & Cable, D. M. (2004). The effect of physical height on workplace success and income: Preliminary test of a theoretical model. Journal of Applied Psychology, 89(3), 428–441. https://doi.org/10.1037/0021-9010.89.3.428
Maestripieri, D., Henry, A., & Nickels, N. (2016). Explaining financial and prosocial biases in favor of attractive people: Interdisciplinary perspectives from economics, Social Psychology, and evolutionary psychology. Behavioral and Brain Sciences, 40. https://doi.org/10.1017/s0140525x16000340
Nix, E. (2023, June 13). Tuskegee Experiment: The infamous syphilis study. History.com. https://www.history.com/news/the-infamous-40-year-tuskegee-study
Yearby, R., Clark, B., & Figueroa, J. F. (2022). Structural racism in historical and modern US health care policy. Health Affairs, 41(2), 187–194. https://doi.org/10.1377/hlthaff.2021.01466
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