Human Genome Editing
Jason Onwumere
Georgia State University
Phil 3740 Biomedical Ethics
Professor Lauren O’Dell
December 10, 2024
Introduction
Today we live in a forever evolving world. What was thought to have been impossible to
achieve by scientists in the past, are now some of the things almost every person in the world
interacts with on a daily basis. Things as complex as a phone or as simple as a toaster, at one
point in time, were not even comprehensible within the capabilities of what science had achieved
during the time. The newest example of this phenomenon happening in current times can be seen
within the new and groundbreaking field of medicine known as human genome editing. This new
technology can utilize several different techniques of DNA splicing such as CRISPR, Zinc
Finger Nucleases (ZFNs), and Transcription Activator-Like Effector Nucleases (TALENs) to
allow scientists to edit genetic information with precision and accuracy (Hildebrandt). The
potential uses of this technology could be far greater than we could imagine. Currently, the main
things this technology could be applied to include: eliminating genetic diseases and enhancing
physical or cognitive traits. Despite its promises, human genome editing raises profound ethical
questions. Any new advancement is a cause for scientists to slow down and really understand
what it is they are doing. This leads to the main arguments against human genome editing
concerning unintended consequences, lack of informed consent, and unequal justice and equity;
as the main reasons that challenge the ethical justification for human genome editing. This essay
argues that human genome editing, while revolutionary, is not ethically permissible due to these
challenges.
Unintended Consequences
The first ethical justification against the use of human genome editing is that there is a
risk of unintended consequences. Despite the precision of the technology and all the different
techniques that have been developed to cut and reach more genetic information, there is a
constant unknown variable for the potential for off-target effects. Off-target effects are
unintended genetic alterations that can cause significant harm to a person's quality of health or
general health and well-being. Yasar Elcin from the Turkish Biology Journal wrote that there is
”inadequate testing and rapid advancements in CRISPR technology may lead to unforeseen
health complications which violate the medical ethics principle of non-maleficence” (Ayanoğlu).
These off-target effects could result in harmful mutations, compromising patient safety that could
be seen in present or future generations (Jacintoz) . These unintended changes can harm a
person's health or well-being, either immediately or across generations. This risk directly violates
the principle of non-maleficence, which requires healthcare professionals and researchers to
avoid causing harm. At the same time, the potential of off-target effects also fails to uphold
beneficence, the obligation to act in ways that promote the well-being of individuals and society.
If genome editing unintentionally causes new diseases or worsens existing health conditions, it
would contradict the core ethical obligation to maintain beneficence and non-maleficence for all.
By risking harm in ways that outweigh the benefit, genome editing technologies fail to ethically
justify their use under the guiding principles of medicine. Moreover, the speed of scientific
advancements often outpaces the establishment of ethical frameworks. Without a comprehensive
understanding of all possible outcomes, genome editing experiments risk creating a situation
where consequences are irreversible. There is currently no system to rectify or reverse the
outcomes of genetic editing gone wrong, which raises concerns about the danger of playing with
the fundamental building blocks of life that could potentially become permanent within the root
of human genetic information without a safety net. These aspects further emphasize why the
potential for unintended consequences cannot be ignored.
Informed Consent
The second ethical justification against the use of human genome editing is there is the
inability to obtain informed consent from those most affected by genome editing... future
generations. Altering the genetic code of an embryo has permanent implications for the
individual who will live with these changes, yet that individual cannot consent to the procedure.
From the point of the first embryo who arrived with the modifications to their genome and the
generation to follow, all would not have to live with a certain change to their genetic information,
which could not be the case if they had consented “no” to a change. Having to think about that
from the perspective of a person who may be affected arises a feeling of a loss of autonomy and
a violation of what one feels is morally and ethically correct. This is supported by Clara
Hildebrandt, and Jonathan Marron who wrote that “genome editing fundamentally challenges the
autonomy of future individuals, as their genetic makeup is predetermined without their input”
(Hildebrandt). Because of this, there needs to be a greater effort to establish a framework to work
under that considers the rights and autonomy of future generations when discussing genetic
modifications. This, however, is not possible at the moment since there is currently no way to
communicate to the future to get full consent to make genetic changes. By proceeding with
genome editing, society risks infringing on the autonomy of individuals in future generations
who are affected by it, which would be a major violation of the medical ethics based on Kantian
principles on the largest scale ever seen if it were to come to the worst case scenario of human
genome editing.
In addition to the ethical challenge of obtaining consent from future generations, there is
a significant issue with the informed consent of current participants. Given the complexity of
genome editing, patients or their families might not fully understand the risks and long-term
implications of the procedures they consent to (Hildebrandt). This raises questions about whether
consent is genuinely informed or merely assumed. The situation becomes even more extreme in
cases involving vulnerable populations, such as children, individuals from low socioeconomic
backgrounds, or those with limited educational resources. These individuals might lack the
capacity or access to resources necessary to make well-informed decisions about their
participation in genome editing experiments.
Justice and Equity
The last ethical justification against the use of human genome editing is the potential to
create a greater lack of justice and equity, not only in healthcare but even as far as creating a
whole new social class. This is all derived from the socioeconomic stratification that occurs
within healthcare. It will be an expensive procedure for anyone to get done based on the current
status of the price stratification of other simpler drugs for things such as diabetes and asthma.
This is pointed out by Clara and Jonathan in their article when they say, “The high cost of
genome editing technologies like CRISPR may limit access to the wealthy, creating a form of
genetic classism” (Hildebrandt). Financial barriers to accessing genome editing tools could
restrict their availability to underprivileged populations, which can further widen healthcare
disparities (Ayanoğlu). Without proper and specific regulation, the benefits of genome editing
could be monopolized by those with greater resources and intent to profit or benefit greatly from
it, leaving less affluent groups at a disadvantage. This inequity contradicts the ethical principles
of justice and fairness, which demand that calls for advancements be accessible to all individuals
regardless of socioeconomic status to protect the ethical principles of medicine.
If genome editing extends beyond medical treatments into enhancements for intelligence,
physical abilities, or even appearance, it could lead to a society where those who can afford
enhancements gain significant advantages over those who cannot. This "genetic divide" would
not only widen existing socioeconomic gaps but could also result in new forms of discrimination.
People with unedited genomes might face stigmatization, reduced opportunities, or outright
exclusion in certain spheres of society. Such disparities would undermine the ethical principle of
justice, which demands fairness and equity in the distribution of healthcare advancements. To
address these concerns, it is important to establish global regulations and frameworks that
prioritize equitable access to genome editing technologies. Without such measures, genome
editing risks becoming a tool for perpetuating privilege rather than a means of advancing human
health and well-being for all. These regulations must also include strict oversight to prevent the
commercialization of genetic modifications for enhancements, ensuring that advancements focus
on therapeutic benefits and not further social stratification.
Counterargument: The Potential to Treat Genetic Disorders
Supporters of human genome editing argue that its potential to treat genetic disorders
outweighs its ethical challenges. The ability for it to make an immediate impact in the many lives
of those affected by such diseases is very powerful. CRISPR is most known currently for the
current work that is being done to eliminate hereditary diseases like cystic fibrosis and sickle cell
anemia in entire bloodlines (Uddin). There is even a therapeutic potential use to use CRISPR for
advancements in therapeutic applications as well (Uddin). The overall presence of human
genome technology without a doubt would improve the quality of life for millions and possibly
for billions in the future too.
However, these benefits must be weighed against ethical concerns. While genome editing
could indeed lead to significant medical breakthroughs, its potential risks and moral implications
cannot be ignored. If billions of people are fundamentally affected at the core by an intentional
violation of multiple fundamental ethical principles of medicine, then how credible is it of a
framework to further enforce in other aspects of medicine that affect fewer people? The ability to
do something does not necessarily mean we ought to do it. Ethical progress must match the
speed of technological progress (or in most cases vice versa) to ensure that advancements do not
come at the expense of fundamental moral principles.
Conclusion
Human genome editing represents a double-edged sword: a tool with the potential to
eradicate genetic diseases and revolutionize medicine but also a technology riddled with ethical
dilemmas, with no direct answers, given the resources we have in the current time and the
unimaginable use that could be derived from it that ultimately could end the world in the most
extreme case of its use. The risks of unintended consequences, the violation of informed consent,
and the lack of justice and equity render genome editing ethically impermissible. While there is
simply no answer to these major red flags yet, the investment into more research continues
unregulated at an unprecedented rate.
Hopefully, it is because it is pivoting... The technology of genome editing is not entirely
bad. While I am against “human” genome editing entirely, agriculture is fair game. Genome
editing in agriculture can be used to enhance crop resilience and nutrition (Sagar Kafle). This can
help relieve other problems we are facing today, such as world hunger, without putting any
ethical principles at risk of being irreversibly violated. This would be the best case forward while
also upholding medical ethics and the Kantian principles that support it.
References
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