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DMEJ

Duke Medical Ethics Journal

Ethical Dichotomy of Gene Engineering: The Capabilities and Dangers of New Genetic Technology

By Vishruth Hanumaihgari

Genetic engineering – the most rapidly accelerating, and quite possibly the most advanced, field of modern medicine. Conceptually, it’s quite simple: altering the DNA of organisms to cure diseases, express more desirable traits, and create or remove mutations. Although it may sound like a revolutionary idea, humans have used genetic engineering for decades. Supermarkets across the world contain fruits and plants labelled as “genetically modified organisms.” These are basic examples of how favorable genes, such as those that confer drought resistance or an amplified flavor profile, can be copied from one crop and inserted into another, creating the ‘ideal’ organism. 

Genetically modified organisms were just the start of what would become a host of complex technologies designed to change the very code that makes life possible. One of the most recent and prominent examples of such is clustered regularly interspaced short palindromic repeats, or CRISPR. Adapted from a naturally occurring bacterial defense system, CRISPR can be combined with enzymes that can edit the human genome. Scientists design a guide RNA that complements the specific region of DNA they wish to alter, after which CRISPR uses that guide to travel to the target site to cut DNA and subsequently add or remove genetic sequences. CRISPR has already been used to treat diseases like sickle cell anemia in humans, and it, alongside tens of other technologies, have the potential to cure hundreds more, including cancer [1].

“Favorable genes … can be copied from one [entity] and inserted into another, creating the ‘ideal’ organism."

From the surface, it seems as though genetic engineering is somewhat of a one-size-fits-all solution to a host of genetic conditions. However, there are numerous flaws with this logic, and it is essential to consider opposing perspectives when deciding the future of the clinic applications of technologies like CRISPR. For one, from a technical perspective, these technologies, like all medicine, can have unintended consequences that are invisible until after decades of research across generations. Already, CRISPR is known to have off-target effects, whereby it can unintentionally alter DNA sequences that are perfectly functional, doing more harm than good [2]. Further, the harmful effects of these changes may not be seen until later on in life or until the next generation is born. Predicting and preventing this risk is extremely difficult, and despite no obvious solution currently existing, it seems as though CRISPR use in humans is already just a few years away. Meanwhile, from an ethical perspective, genetic engineering remains the hottest topic in medicine.

 

As described earlier, CRISPR and other technologies have the potential to treat genetic diseases like hemophilia or cancer, significantly improving patient outcomes and extending lifespan. Although this is certainly beneficial, it also raises questions over how society views diseases in general. Many question whether they should be regarded as mere imperfections that should be corrected or as naturally occurring differences that exist between humans. For those who accept gene editing technologies, they will likely live a much higher quality of life and have more freedom to pursue their passions; for those that do not, they may be treated as outcasts or unfortunate sufferers, and stigmas around having genetic conditions will undoubtedly become much more extreme and hurtful. Society has developed accommodations for people with such conditions, but the quality and availability of these accommodations may decline with the rise of genetic engineering. Beyond just diseases, genetic engineering can also change other, more neutral traits, such as eye color, height, and even muscle mass [3]. This raises a host of other questions: should parents be allowed to pick and choose what traits their children have, essentially designing unborn babies to appear a specific way? Is it morally justified to choose an unborn child’s gender, appearance, and other genetic predispositions without their consent? Drawing the line between what traits and genes CRISPR can and cannot be used to edit, including whether the benefit of doing so would be from a survival or purely aesthetic/behavioral perspective, is essential; determining whether genetic engineering should only be allowed in informed adults of a certain age of consent (somatic editing) or also in future, unborn generations of children within families (germline editing) is also crucial [4]. Yet, reaching a consensus on these two debates, both among the scientific community and the general public, is likely impossible. Religious, political, and moral beliefs are unique to every individual, and all of these factors play into whether or not a person supports genetic engineering. Why? Humans are products of evolution. Hundreds of millions of years of mutations and reproduction have produced a population in which no two individuals are the same. However, if ‘desirable’ traits are heavily favored, genetic engineering has the capacity to reduce diversity among the population; in other words, although it may save lives, it may also make each one of us less unique [5]. Taken to the extreme, several decades of genetic manipulation may lead to the creation of an ideal body type, worsening the cycles of body shaming, racism, and discrimination that already plague our schools, hospitals, and workplaces.

 

Apart from the medical side of genetic engineering, the financial element provides yet another source of concern. CRISPR treatments today are extremely expensive – even years down the line, CRISPR is expected to cost well over $2 million per patient [6]. Many experts argue that this could exacerbate preexisting inequalities based on socioeconomic status in medicine. Namely, it is likely that only the wealthy will be able to afford such treatments, restricting the the disease-treating and trait-modifying capabilities of genetic engineering to an already privileged stratum of the population. On one hand, there is the idea that if such technologies can provide potentially life-saving changes, then anyone who can access and afford them should be able to use them. Conversely, it can easily be argued that until the cost of technologies are reduced significantly, to the point where the majority of the population can afford them, they should not available to anyone, as they may be used by the wealthy as yet another tool to increase socioeconomic gaps in medical care and quality of life [7]. Moreover, designing and verifying a CRISPR design before testing it in a real human is a long and exorbitant process. Even with a person’s specific DNA code, the treatment, which must be designed uniquely and only for them, must be also tested in other clinical models (such as lab mice), tested in real human cells, and modified to eliminate unwanted side effects before being used – a process that can take several years and costs hundreds of thousands of dollars [6]. This financial burden may disincentivize a large number of pharmaceutical companies from entering the genetic engineering market, leaving only a few with heavy pricing control. Meanwhile, these companies may choose to limit the availability of technologies or offer them at unreasonable prices if left unregulated. Uncertainties thus exist around whether CRISPR research should be publicly or privately funded, and whether genetic engineering at large should be regulated as a commodity for the entire public’s general well-being or as a for-profit industry.

To further discuss the topic of government regulation surrounding genetic technologies, it is important to establish that no one universal code has been written to dictate the limits of genetic technologies. Different countries and agencies have drafted sometimes contrasting rules surrounding the use of CRISPR in humans, in embryos, etc. [8]. Historically, the majority of the world’s governments have agreed on exact protocols dealing with vaccines, the uses of controversial medicines, and international distribution of drugs. Genetic technologies are an entirely different story, however, and the idea that most governments will agree on where and when they can be used, the conditions or scenarios that warrant their use, and where the line is drawn as to how far engineering of future humans can be taken is far-fetched. After all, a plethora of unanswered questions exist about CRISPR alone beyond its medical applications, and despite already being used in humans, the debates surrounding these major ethical questions have only just begun. Without such agreements, it is hard to envision what the future of genetic engineering will look like in different parts of the world. Still, as humans move into an increasingly globalized society, policies in one region will, without question, affect the lives of nearly everyone on the planet. 

 

Overall, from a purely medical perspective, genetic engineering technologies provide numerous groundbreaking advantages to modern treatments. They can allow doctors to treat otherwise incurable disease and design babies to have a longer lifespan and a higher quality of life. At the same time, however, they raise a myriad of ethical questions with no clear answer. Debates surrounding the profiteering of genetic engineering, its unavailability to a large subset of the population, its lack of universal regulations, and how it changes the way we view diseases, disabilities, and phenotypic traits as a whole are still unresolved. Not only are decades of research needed before genetic engineering is truly perfected, but decades of deciding where the human species as a whole is headed is also necessary. Ultimately, the way the world regulates genetic engineering technologies may very well be the way it regulates our future on both the individual and species level.

Review Editor: Rijul Rajesh
Design Editor: Jackie No
References

[1] Cyranoski, D. (2023, March 16). CRISPR Gene-Editing Sickle Cell Success: Cost, Ethics. NPR. https://www.npr.org/sections/health-shots/2023/03/16/1163104822/crispr-gene-editing-sickle-cell-success-cost-ethics

[2] Davies, B. (2019, November 14). The technical risks of human gene editing. National Center for Biotechnology Information, 34(11), 2104–2111. https://doi.org/10.1093/humrep/dez162

[3] Funk, C., & Kennedy, B. (2016, July 26). Human Enhancement: The Scientific and Ethical Dimensions of Striving for Perfection. Pew Research Center. https://www.pewresearch.org/science/2016/07/26/human-enhancement-the-scientific-and-ethical-dimensions-of-striving-for-perfection/

[4] Chase, M. (2019, January 22). Perspectives on Gene Editing. Harvard Gazette. https://news.harvard.edu/gazette/story/2019/01/perspectives-on-gene-editing/

[5] Regalado, A. (2017, January 23). The World Needs CRISPR, and CRISPR Needs Oversight. TIME. https://time.com/4626571/crispr-gene-modification-evolution/

[6] Kolata, G. (2022, December 9). We Can Finally Cure Sickle Cell. Why Are We Holding Back? The New York Times. https://www.nytimes.com/2022/12/09/opinion/crispr-gene-editing-cures.html

[7] What are the Ethical Concerns of Genome Editing? (2017, August 3). National Human Genome Research Institute. https://www.genome.gov/about-genomics/policy-issues/Genome-Editing/ethical-concerns

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