Genome Testing in Humans and its Effects on Future Generations

Megan Oxley

Appalachian State University

Rhetoric and Composition: 2001-133

Beth Cox

11 October 2023
 Abstract

Genome editing is a scientific process in which you can identify a specific gene, and make

specific modifications to the genetic material in order to influence a certain trait (Graham, 2023).

Genome editing is referred to in various ways such as ‘genetic editing’, ‘gene editing’ or ‘genetic

modification’. While genetic editing hasn't been approved to work on humans yet, leading

technology is heading towards human trials and with that comes various ethical questions. Is it

ethical to test and edit human genes in order to remove ‘bad’ traits? Not only does this cause

stigmatization but it can also become complicated in other aspects. It leads to questions about

equality of access, discussions about marginalized groups, as well as safety issues. These

ethical situations are extremely important to consider, as well as the benefits that genome

editing has. With this technology doctors and scientists will have the ability to ‘cure’ or get rid of

various heritable genetic diseases. This paper aims to consider the ethical dilemma that

genome editing is, as well as weigh the technicalities of genetic editing and the effects it may

have on both the present world and future generations.

 Genome Editing in Humans and its Effects on Future Generations

A History into Genome Editing

Genetic editing is a relatively new technology. The first documentation of genetic editing

dates back to the 1990’s, but did not start advancing until 2009 when a technology called

CRISPR (clustered regularly interspaced short palindromic repeats) was invented. Crispr has

been the leading technology in genome editing since it was invented and has made incredible

strides in the past fifteen years. Before this technology was invented, gene editing was not only

extremely expensive, but very slow. After crisprs breakthrough with their crispr-cas9 system

gene editing became the preferred method of genetic engineering as it allows a scientist to have

more control over specific DNA sequences and genes compared to other methods in the field.

“By making gene editing cheaper, faster, more powerful, and easier to use, CRISPR is expected

to significantly advance the field of precision medicine by bringing gene-editing therapies to the

forefront of health care.” (Subica, 2023)

Gene editing being at the forefront of healthcare will allow for more positive impacts than

just curing inheritable diseases. While it does have the ability to create treatments for advanced

medical diseases, it also allows researchers to be able to discover considerably more

information about not only eukaryotes (multi-celled organisms) but also prokaryotes

(single-celled organisms). In fact research has already begun to identify and modify genetic

information in single celled organisms. (Chen & Palli, 2022)

While the crispr system and gene modification in general has countless benefits in

various fields such as medicine, agriculture, and technology, it also leads to ethical questions

that test our moral judgements. As this technology continues to advance, ethical dilemmas such
as worsening social inequality, equality of access, the risk of ‘designer babies’, and

stigmatization of certain traits will become more prominent. (Graham, 2023)

The Current Benefits of Genome Editing

Presently genetic modification is predominantly focused on crops and some animals, this

is known as genetically modified organisms (GMO’s). GMO’s aim to make crops healthier, taste

better, and less prone to disease. While these traits are useful to our society, just like human

gene editing, GMOs are not fully researched yet and have been observed to demonstrate

various negative reactions. Like human genome editing, GMOs have also received a level of

criticism from the public as it is not seen as natural. In order to genetically modify a crop,

scientists must first identify specific genes within the plant, and then modify it to fit the trait they

want. In order to produce more plants that reflect these modifications the science becomes

more complex. One of these complexities explains that “scientists must understand how the

gene is regulated, what other effects it might have on the plant and how it interacts with other

genes active in the same biochemical pathway.” (Abbas, 2018). This same process would be

repeated in humans in order to create or remove certain traits or genes.

Of the countless benefits that human genome editing will be able to provide, advanced

medical services are the most beneficial, and are specifically aimed towards inherited diseases

that are not yet treatable. These diseases are extremely hard to cure with current technology,

but gene editing will be able to change that. An example of the effects that genetic modification

can have on genetic diseases can be shown in cystic fibrosis. Cystic fibrosis is a recessive

genetic disorder which is caused by a mutation in the CF transmembrane conductance

regulatory gene (CFTR) (Wang, 2016). While there has been a huge increase in the amount of

patients who have been able to be treated, the only long term solution would be genetic therapy.

This would involve treating the genetic lesions in the genome through gene editing technology
such as CRISPR. This technology has the potential to help countless people, and lead to new

breakthroughs in the medical field.

Significant Ethical Quandaries in Present Day

Like most scientific fields, the more that we learn about a topic, the more complex it

becomes. This applies to gene editing too. Genetic modification is not a simple or

straightforward process like some medical practices are. While it does have the ability to cure

heritable diseases, its ethical concerns are complex. Topics such as worsening social justice

issues, safety issues, and equitable access are important to recognize.

There are countless sources that document the discriminatory and unequal medical

practices that exist right now. In fact “historically, minority patients and populations have been

persistently excluded from clinical research, innovations, and care—contributing to the current

health equity gap by suppressing health benefits for groups experiencing the poorest health

outcomes.”(Subica, 2024). Medical practices and research are still excluding minorities and

have an outdated way of thinking, which may only worsen pre existing social justice issues.

Along with social justice issues, equitable access is another important unknown in this

situation. Ethically, who gets to have the genome editing procedure. Depending on who

manufactures the machines, a company like CRISPR could have the power to monetize it, and

withhold it from those who actually need the procedure. Instead of curing life threatening genetic

disorders, could it be used as a form of plastic surgery for the one percent? Even if it does

become available in hospitals for genetic conditions, equitable access to healthcare in America

is already an issue. Data shows that “when seeking health care, Hispanics are more than twice

as likely as non-Hispanic whites to use hospital outpatient clinics or emergency rooms, and

African-Americans are more than three times as likely. As these minorities progressively lose

health insurance coverage, they often have nowhere else to turn but the emergency room for

health care.” (Weiss, 1997). There is a huge disparity in medical access in this country, where
people who can afford health care get the best available, like genome editing, and those who

are not wealthy are forced to rely on the ER.

How Will Genetic Modification Affect Future Generations? Genome editing is one of

the fastest growing fields in today's society, and will only continue to advance. As this field

grows these ethical concerns will become increasingly more present in our world, and will affect

future generations more significantly. While the benefits that genetic editing provides today is

likely to stay the same, the ethical problems will only grow more complex. Questions of consent

and stigmatization will be extremely prominent.

As genome editing shifts from being performed predominantly on crops into being

performed on humans, questions of consent are important to discuss. Given the history of the

eugenics movement in the United States, consent is an important factor. The eugenics

movement was a period in the mid 20th century in which two-thirds of the US passed a law

legalizing the forced sterilization of ‘unfit’ citizens (Markfield, 2019). This movement was legal in

various parts of the country until the 1970’s when the final state banned forced sterilization.

Majority of the citizens who were targeted were those with disabilities, and people of color,

particularly women. Genome editing raises the issue of eugenics, because it has the ability to

modify certain traits. If genome editing continues to advance, scientists will have the ability to

modify both internal and external traits, this includes skin color, eye color, imperfections, genetic

diseases, etc creating widespread stigmatization. (Subica, 2023).

These changes in traits will affect every generation after us. In fact due to growing

technology like genome editing a term called ‘designer babies’ is a growing concern. Research

has shown that there are “raised fears that genetically altered "designer babies" would

exacerbate social inequality, with wealthy people able to ensure their children had desirable

traits.”(Graham, 2023) If scientists and lawmakers decide that genome editing should be

allowed to be practiced on fetuses, we could see the risks involved with that. Some of these
risks include “the ‘commodification of babies’”, “the temptation for couples to ‘design’ their child”,

as well as “de establishing the family (between the ‘modified’ children and the others)”.(Pougnet

et al., 2023).

Conclusion. Genome editing is an extremely complex moral dilemma to analyze. It is

important to recognize the benefits that it provides to medical research, and the powerful

contributions it can make in curing various medical conditions, while also recognizing the other

social issues it may cause. Those in the field and who are working on advancing genome

modification technology need to understand the delicate nature of this topic, and need to

advocate for the safe use of genome editing. Will the threat of worsening social justice issues,

safety concerns, and stigmatization of certain traits outweigh the medical fields increasingly

advanced technology?
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