Will Gene Editing Ever Be Normalized?

Genome editing has revolutionized science by presenting one of the most powerful methods to edit the DNA of all things living. The most commonly known gene alteration therapy is CRISPR which stands for, clustered regularly interspaced short palindromic repeats. It is actively being researched in countless laboratories for its unprecedented potential. It has the ability to edit genomes for incurable diseases, but is this method completely safe for humans and from exploitation? Genomic editing may face social, ethical, and legal concerns regarding the practice and it may ultimately be stopping it from being launched for public access.

Genome editing can occur in two forms, germline therapies and somatic therapies. Germline therapy is the change in genomes in reproductive cells, typically to correct detected defects in the genomes of the few embryonic cells of a zygote. This method is useful to correct disease-causing genes before they are fully encoded in the individual’s genomic sequence. This prevents the soon-to-be-child from developing the disease that otherwise would have been difficult to treat or cure, and saves following generations from the same gene. However, it is hard to tell the effects of editing genomes in reproductive cells which develop to be a full-grown human. The concern is not only the long-term effects of this gene editing method but also the ethical implications. 

Somatic therapies involve editing the genome of somatic tissues or organs with a genetic defect. Unfortunately, in some cases when the genetic disease has already become embedded in an individual’s genetic sequence, it is difficult to reverse its pathology. “The efficacy of somatic gene therapy, if feasible at all, is also complicated by the necessity of targeting billions of cells in solid tissues and organs.” (Wolf et al., 2019, para. 3). Proof-of-concept studies have shown that somatic therapies may be successful in some congenital diseases in mice but this genome modification is not transmittable to future generations like germline therapies are. This method is extremely experimental and has been known to cut the wrong genomic sequence and there is no telling how it can affect humans in, the short and long term.

There was a successful attempt at embedding genetically modified healthy cells into a one-year-old girl, Layla, with leukemia using TALENS, a somatic gene therapy. She has acute lymphoblastic leukemia, an aggressive form of the cancer that originally granted her months left to live. Layla received one vial of immune T cells that were genetically engineered to target leukemia cells. This was a highly experimental procedure that had never been done to a human, let alone a baby, but the emergency ethics committee allowed it. (Sample, 2015). This somatic gene therapy, only ever done on mice before, had cured Layla of ALL and began the path of using gene therapies for cancer. In addition to leukemia, the World Health Organization recognizes that somatic therapies have been successful in addressing HIV, sickle-cell disease, and other typically hard-to-treat genetic diseases. This usage for genome editing is the best way the tool can be used responsibly and ethically but it must be highly regulated.

Many can come to agree that the most optimal use for genome editing on humans is to rid them of hereditary diseases and that is how the public wants to keep genomic editing on humans. There are thousands of possible gene mutations that can affect any human genomic sequences that can come to affect millions of people. Diseases such as epilepsy, cystic fibrosis, diabetes, and other gene-based diseases can be reverted from their mutated form as soon as the zygote is formed. This enhances our ability to treat and cure people that we previously thought we couldn’t by increasing the speed and efficacy. Genomic editing can bring health to those who were unfortunate to inherit genetic mutations whether that is by chance or bound-to-be through your lineage. 

Although genome editing has been around since the 1960s, and as far as successfully used on humans, it is still an extremely experimental method. (Bleicher, 2018, pra. 1). As previously mentioned, it has been noted that it is capable of cutting the wrong genomic sequence. ”In more than half of the cases, the editing caused unintended changes, such as loss of an entire chromosome or big chunks of it.” (Schiefelbein, 2023, pra. 1) So, before looking at any other concerns that arise from the opinions of other people, the method itself is not perfected enough to explore in clinical trials just yet. The article continues to say that in a study done at Columbia, there was little success in the mutation being fixed in embryos and instead actually eliminated the entire chromosome that the mutation originated from. This means that results may have shown no detection of the mutation but only because the entire chromosome was wiped out. Ultimately, the CRISPR gene editing method is highly variable and too inconsistent to be anywhere close to being a reliable solution for genetic diseases until it becomes safe and effective

Hypothetically, let’s say gene editing has become flawless and ready for use on humans. Before looking at gene editing methods being practiced, the ability to do so is restricted as legal concerns can arise almost anywhere. The Dickey-Wicker Amendment was put in place by the US to deter genome editing on human embryos because it would affect individuals not born yet which not only brings about ethical and moral concerns, but legal ones. Sure, gene editing therapies on humans can eliminate genetic disorders for future generations of families but there is no research to solidify the long-term effects of edited genes in human DNA. (Kearl, 2010). If there were to be an unforeseen consequence of this treatment, the individual affected would have the right to sue whoever was responsible. That is where it gets tricky because either the person who administered the therapy is liable or the person who consented on the affected individual’s behalf when they were merely a bunch of cells.

To some, gene editing can be the next greatest thing to help mankind, but to others, it is a potential threat to what defines us as humans. Scientists began exploring the idea of genome editing on humans with the intention of finally curing genetic diseases that were almost impossible to cure before. But when the public receives a poll from AP-NORC, it shows that 7 out of 10 Americans would allow gene editing methods to revert mutated genes that would cause the child to inherit the genetic disease. (Neergaard, 2018). Interestingly, the population is not in complete agreement with using gene editing to transform the DNA of humans for an issue that almost has no other option. The ethical conflict of this may be religion, where people believe that God created individuals the way they came out for a reason so nothing should alter that craft. Outside of religion, people may believe that nature should be left untouched. I can understand leaving nature untouched by human advancements, but if we have the resources, ideas, and possibilities, why not practice our capabilities for good?

A lot of questions come up when dealing with editing genes in human genomes. Should parents be able to design their children? Shouldn’t the child being customized have a say? Doesn’t the modification of a human disqualify their authenticity as an individual? I believe if gene editing was left in the hands of humans in society, it would be heavily exploited and start a surge of designer babies. According to another AP-NORC poll, 7 in 10 Americans are against using gene editing tools to grant “desirable“ capabilities or physical traits. (Neergaard, 2018). That suggests that there is a fraction of the American population that would participate in editing their children’s genes as if it were a cosmetic procedure. And through germline therapy, happening before the child can begin to form their consciousness, the child gets no say in such alterations. This is a preeminent ethical issue in previous debates involving abortion where people argue that the child never got the say to have their development terminated. Moreover, setting your child up to fit the beauty standards of society through gene therapy almost artificializes the uniqueness of the individual.

If left in the hands of people, they may take the liberty to edit their children before they develop to possess desirable traits. This can cause almost irreversible damage to society in a wider spectrum. Because genome editing therapies may be rather expensive, the rich may be able to use their wealth to, not only be first in line to genomically treat their genetic diseases but even use it for cosmetic purposes. They may be able to pay a pretty penny to ensure their offspring are genetically tall or have promised blue eyes. The ability of the rich to engineer their babies to possess favored traits may dangerously increase not only health disparities between the two social classes but also “ability” disparities. It is not a practical reality, but if there isn’t enough restriction in genome editing, rich people may refer to genome editing as the newest cosmetic procedure. The closest example today to engineering a baby is with PGD, preimplantation genetic diagnosis, where embryos are screened for genetic conditions for the parents to select the best traits they would want for their soon-to-be conceived child. A famous case of this was back in 1996, Monique and Scott Collins desperately wanted a girl, and although this practice was only done to pick out their desired gender for their child, this instance riled up conversations about parents being able to pick out other physical traits, unrelated to the health of the child. (Ly, 2011, pra. 3). So imagine going further than ensuring the gender of your child and using gene editing to endure intelligence.

The beauty of humans comes from the untouched random combinations of genes that came together from both your parents. I feel as if once that genetic sequence is touched, not for health reasons but to modify your appearance or abilities, you’re cheating your human qualification. We’re all made unique and by chance and if you arrange your child to possess insignificant features, that is when you take away their individuality. That is when legal, ethical, and social problems arise that not only affect the child being designed but also the other people who witness this type of engineering on humans. 

References

Bleicher, Ariel. (23 Oct. 2018). “Genome Editing before CRISPR: A Brief History.” Genome Editing Before CRISPR: A Brief History. UCSF Magazine. 23 Oct. 2018. https://medium.com/ucsf-magazine/genome-editing-before-crispr-a-brief-history-f02c1e3e2344

Kearl, Megan. (27 Aug. 2010) “Dickey-Wicker Amendment, 1996.” Embryo Project Encyclopedia. https://embryo.asu.edu/pages/dickey-wicker-amendment-1996. 

Ly, Sarah. (31 Mar. 2011). “Ethics of Designer Babies.” Ethics of Designer Babies. Embryo Project Encyclopedia. https://embryo.asu.edu/pages/ethics-designer-babies. 

Mientka, M. (2014). “You May Soon Be Able To ‘Design’ Your Own Baby.” Medical Daily. http://www.medicaldaily.com/designer-babies-fda-may-allow-researchers-create-genetically-modified-baby-free-hereditary-disease.

Neergaard, Lauran. (28 Dec. 2018) “Most Americans Support Gene-Editing Embryos to Prevent Diseases, Poll Shows.” STAT. www.statnews.com/2018/12/28/poll-americans-support-gene-editing-embryos-to-prevent-disease/.

Reeder, John. (12 July 2021). “WHO Issues New Recommendations on Human Genome Editing for the Advancement of Public Health.” World Health Organization.

www.who.int/news/item/12-07-2021-who-issues-new-recommendations-on-human-genome-editing-for-the-advancement-of-public-health#:~:text=Somatic%20gene%20therapies%2C%20which%20involve%20modifying%20a%20patient%E2%80%99s,vastly%20improve%20treatment%20for%20a%20variety%20of%20cancers.

Reljic, Dusan. (2019). “Designer Babies.” The New York Times Upfront. www.upfront.scholastic.com/issues/2018-19/051319/designer-babies.html?language=english#1270L.

Sample, Ian. (5 Nov. 2015). “Baby Girl Is First in the World to Be Treated with ‘Designer Immune Cells.’” The Guardian, Guardian News and Media. www.theguardian.com/science/2015/nov/05/baby-girl-is-first-in-the-world-to-be-treated-with-designer-immune-cells.  

Schiefelbein, Mark. (25 July 2023) “Lab Tests Show Risks of Using CRISPR Gene Editing on Embryos.” STAT. www.statnews.com/2020/10/29/lab-tests-show-risks-of-using-crispr-gene-editing-on-embryos/.Wolf, D.P., Mitalipov, P.A. & Mitalipov, S.M. (2019). Principles of and strategies for germline gene therapy. Nat Med 25, 890–897. https://doi.org/10.1038/s41591-019-0473-8