The World Health Organization (n.d.), which is a specialized agency accountable for international public health, defines human genome editing as a method for making specific changes to the DNA of a cell or organism. Genome editing can be utilized to alter, remove, or add DNA to the genome. The most prevalent and widespread method of gene editing is a molecular tool known as CRISPR-Cas9 [CRISPR]. CRISPR is a powerful technology developed by American scientist Jennifer Dounda, French scientist Emmanuelle Charpentier, and their colleagues (Fridovich-Keil, n. d.). CRISPR uses sequences that are transcribed into short RNA sequences. The sequences can guide the system to matching sequences of DNA. Once the target DNA is found, one of the enzymes produced by CRISPR – binds to the target DNA and cuts it. This shuts off the targeted gene. These techniques allow researchers to modify mutations in the three-billion-letter sequences of the human genome (Broad Institute, n.d.). CRISPR was later refined by Feng Zhang and his colleagues (Fridovich-Keil, n. d.). Director of Internet and Technology at Pew Research Institute, Alec Tyson, and fellow researchers, who study the impact of genomics on society, supports CRISPR by emphasizing the use of genome editing tools may be able to provide treatment for diseases with a genetic basis, such as cystic fibrosis and diabetes (Anderson, et. al, 2022).
However, human genome editing is subject to intense debate over the possible hazards and consequences for society. Biochemist and creator of CRISPR, Jennifer Doudna has recognized that CRISPR carries great risk, including the potential for an increased risk of cancer. According to an interview by The New York Times, conducted on October 22, 2020, she cautioned against using CRISPR for embryo editing due to the unknown consequences (Sufian & Garland-Thomson, 2021). This technology proposes endless, and morally questionable prospects, beyond its applications in human health (Fernández, 2020). If taken to the extreme, some worry that genome editing would create classes of people defined by the quality of their engineered genome (National Human Genome Research Institute, 2017). MedlinePlus, a service of the National Library of Medicine, adds to this by noting, “Because of these ethical concerns, the U.S. Government does not allow federal funds to be used for research on germline gene therapy in people.” (MedlinePlus, 2022). These concerns raise the question; To what extent does the adoption of gene editing in the U.S. require moral courage? As said by Franklin D. Roosevelt in his famous Inaugural Address, “Restoration calls, however, not for changes in ethics alone. This Nation asks for action, and action now.” (Roosevelt, 1933). It is imperative that government officials, researchers, and healthcare workers act now to prevent the misuse and exploitation of genome editing. Furthermore, it is important to ensure that are appropriate regulations and policies in place to protect susceptible populations from potential harm. As reported by Ted Thomas, Director of the Department of Command and Leadership for the U.S. Army, and Ira Chaleff, president of Executive Coaching & Consulting Associates in Washington, DC, “It takes moral courage and intelligent disobedience on the part of followers to know when not to obey and even to know to go outside of the hierarchy and report any malfeasance and wrongdoing. It may cost a job, reputation, or other, adverse consequence, but it is the right thing to do.” (Thomas & Chaleff, 2015). Government officials, researchers, or health care workers may have the authorization to make decisions regarding the application and policies surrounding genome editing. However, it is important to remember they are responsible for protecting the public, in this case protecting them from any potential risks associated with genome editing and the misuse of this technology. Nevertheless, it is critical for government officials, researchers, and health care workers to exercise this intelligent disobedience by questioning dangerous practices and societal consequences.
Dangerous Practices
Although genome editing holds significant potential to treat and cure life-threatening diseases, the technology is still relatively new. In an experimental study conducted on human cells, Nancy Fliesler, Master of Science from Harvard University, determined CRISPR carries an undiscovered danger. Her study concluded CRISPR has the potential to increase cancer risk due to the large DNA insertions. The large insertion of DNA can lead to mutations causing cells to grow and divide uncontrollably, which ultimately leads to the development of cancer (Fliesler, 2022). Sharon Begley, who obtained a BA degree in combined sciences from Yale University, agrees with Fliesler by saying, “Editing cells’ genomes with CRISPR-Cas9 might increase the risk that the altered cells, intended to treat disease, will trigger cancer…” (Begley & STAT, 2018). This is because cutting the DNA to knock out a certain gene initiates a damage response facilitated by p53. P53 is a tumor suppressing gene whose job is to stop cell growth if there is damage to the genome. If damage is detected, p53 initiates programmed cell death to prevent the cell from multiplying out of control. However, cells that have undergone CRISPR that have a p53 mutation will not be able to stop growing and dividing. This increases the likelihood of developing cancer (Oligonucleotide Therapeutics Society, 2022).
Another implication involving genome editing is the use of CRISPR and similar technology on human embryos. Dr. Nada Kubikove from Oxford University reported that new findings are showing that commonly used gene editing techniques, like CRISPR-Cas9, may have unwanted and dangerous consequences on human embryos. This is due to human embryos being incapable of repairing damage to their DNA with implications for CRISPR genome editing (Cooke, 2023). Marilynn Marchione, former chief medical writer for the Associated Press, agrees by explaining an experiment conducted by researchers at Columbia University. According to Marchione, the researchers harvested 40 embryos made from healthy egg and sperm from a man with a genetic mutation that caused blindness. Editing was aimed at adding the missing letter in the DNA that caused blindness. The edited cells then were analyzed at different stages of development to see how many cells had repaired the mutation. The researchers stated, “What we found is that instead of the mutation being fixed, the chromosome carrying the mutation is gone.” A prominent change that will likely be lethal for the embryo. Many other cells showed changes in chromosomes that also could do harm (Marchione, 2020). Elizabeth Cooke, who graduated with a degree from Oxford University, builds on this by expressing how more often than not, the modified DNA strand of the embryo is permanently broken. This could potentially lead to genetic defects inside the embryo (Cooke, 2023).
Societal Consequences
One of the most prominent discussions regarding DNA altering in humans is the ethical controversy surrounding the practice. Ted Thomas and Ira Chaleff, authors of Moral Courage and Intelligent Disobedience, have observed, “Society and culture places a large amount of pressure on people to obey orders.” (Thomas & Chaleff, 2015). Director of Internet and Technology at Pew Research Institute, Alec Tyson, and fellow researchers, who study the impact of genomics on society, expands on this by showing how Americans are divided over editing their baby’s genes to reduce potential health risks. According to Tyson and colleagues, “Nearly three-quarters (73%) [Americans] think most parents would feel pressure to get gene editing to reduce their baby’s risk of developing disease if its use becomes widespread.” (Rainie et. al., 2022). A majority of Americans think parents would feel pressure to get this treatment method done on their child. Furthermore, parents may feel pressure to agree if a family member or friend is getting treatment done on their children. Parents may view this technology as a method to protecting their child from any future health concerns (Rainie et. al., 2022). As a result, it is imperative for government officials, researchers, and health care workers to protect and inform the public about the future pressure gene editing may promise.
While gene editing has successfully been used on a one-year-old named Layla to help her fight leukemia, the technology remains accessible to only wealthier and privileged populations (National Human Genome Research Institute, 2019; Whlelan & Goodwin, 2022). Ned Pagliarulo, lead editor for BioPharma Dive, reported that the cost of CRISPR therapy and treatment is likely to cost around 2.2 million dollars. However, the million-dollar price tag immediately raises concerns about access (Pagliarulo, 2023). Families far below the upper class are unlikely to have the money to take advantage of such treatments. As stated by Andrew Subica, who has a PhD from the University of California, “These extraordinary costs place gene therapies primarily within the reach of society’s most advantaged while excluding much of the population.” (Subica, 2023). According to Subica, minorities are often denied access to important social, economic, and healthcare needs primarily because of their marginalization. These groups will be essentially owing to their minoritized status (Subica, 2023). Allison Whlelan [MD] and Michele Goodwin, professor of Constitutional law and Global health Policy, agrees by expressing that if this technology remains accessible to just privileged and wealthier populations, genome editing will only exacerbate racial, social, and economic tensions (Whlelan & Goodwin, 2022).
Lastly, one of the most controversial and important ethical issues regarding DNA modification is the possibility of genetically enhanced humans. Researchers and commentators, such as Michael Sandel from Harvard University have cautioned against having power over the genomes of children. This powerful control could lead to a sense of “hyperagency,” which is describe by Mildred Solomon, president of the Hasting Center, as losing the sense of children as gifts to be nurtured as they are, and rather see them as objects that have the potential to be designed. Solomon points out that the temptation to use these technologies to enhance our children will be enormous (Solomon, 2019). Until now, trials in genome editing have focused on targeted genetic diseases, but science commentator Anjan Ahuja believes the focus may move to genetic enhancement (Odir, n. d.). MacKellar, PhD, adds to this by saying, “If such a conclusion is accepted then this again has a clear eugenic element since a new individual is being brought into existence in preference to another…” (MacKellar, 2018). The field of genetic engineering and modification has always had an uncomfortable tie to eugenics: “the science of improving people through controlled breeding.” (Gebelhoff, 2016). Eugenics is the immoral theory of “racial improvement” as well as “planned breeding.” Eugenicists believed that this would allow them to perfect the human race and terminate “social ills” through genetics and heredity (National Human Genome Research Institute, 2019). The whole purpose of eugenics was historically to improve humanity by promoting only the reproduction of white, wealthy, able-bodied, and non- immigrant populations. However, some think gene therapy cannot be considered apart of eugenics because the intention is to help patients with diseased traits to live longer and healthier lives (Nature, 1997). Sandy Sufian, Associate Professor of Health Humanities and History at the University of Illinois, disagrees by emphasizing that although CRISPR uses technology methods different from eugenic measures in the past, it nonetheless will reduce people with genetic differences or traits that are considered “less desirable” from coming into the world (Sufian, 2021).
Conclusion
All in all, genome technology is still relatively new and unknown. Because of this, human genome editing is subject to intense debate over the hazards and consequences for society. Given these results and information, it is important for researchers to continue to investigate the possible consequences of adopting gene editing on a wider scale. It is imperative that government officials, researchers, and healthcare workers act now to prevent the misuse and exploitation of gene editing.
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