Genetic Modification: An Ethical Dilemma

Greg Neill

Department of Nursing, Texas Lutheran University

NURS 336: Healthcare in the 21​st​ Century

Dr. Patricia Fichter-Patrick

December 29, 2020

 Introduction

The evolutionary history of homo sapiens can be neatly summarized by the concept of

Darwinian evolution. This states that all humans can be traced back to a single-celled organism,

which over the course of a few billion years of random mutations, outcompeted other organisms

in its fight for survival. These random mutations of genes eventually combined with the process

of sexual selection and produced the homo sapiens who populate every corner of planet Earth.

Darwinian evolution brought us to this point and if given a few more billion years, it would

surely change us into something far different from what we are today. However, Darwin’s

principles are no longer the only guiding force of our biological nature. Human beings have

reached a point where our biological development will be driven not only by sexual selection and

random mutations of genes; it will be self-guided.

The scientific community has already begun bypassing natural evolution by using gene

editing technologies to change our offspring into something that would have taken millennia for

nature to do on its own. The 2020 version of homo sapiens was never going to be the final one

that evolution would have designed, but now change will be accelerated via genetic technologies.

Despite their inherent dangers, these have little chance of being stopped by those who believe

them to have higher risks than rewards. Once implemented, the effects will be far reaching and

will fundamentally change the profession of nursing. Hopefully, we can gain a clearer

understanding of the ethical principles involved so this “new” evolution of humanity can be

guided by values that will produce a positive outcome. The aim of this paper is to examine

ethical considerations of genome editing as it relates to promoting a healthy and equitable

society, policymaking, and the field of nursing. These include:

 ● possible ways that government regulates these technologies

● how to respect different cultures around the world

● how to incorporate our societies’ ethical values into effective policies

● explaining why this technology will be implemented despite

understandable reservations from the public, and

● providing a clearer picture of what the future may hold in an increasing

genetically modified society.

Dilemma

The recent advances in gene editing tools make genetic modification faster, easier, and

cheaper than ever. These tools will allow us to cure diseases and prevent much human suffering,

which once seemed impossible to comprehend. Genetic diseases like Downs Syndrome,

Huntington’s, cystic fibrosis, and sickle cell anemia are just a few which plague individuals, their

families, society, and humanity. If we have the ability to reduce human suffering, then it seems

that we would be obligated to act quickly. Yet, the tools that have the capacity to cure these

diseases are powerful and the consequences of using them will not all be positive.

The most recent technology that has brought the topic of the ethical implications of gene

editing back onto the table is known as CRISPR (Ishii, 2015). CRISPR gives scientists the ability

to alter the genetic structure and function of individual genes. The actual DNA cleaving

mechanism in CRISPR was derived from a natural defense mechanism in certain types of

bacteria and archaea. These organisms have an enzyme that cuts up pieces of DNA from viruses

that have infected their cells. It was the discovery and repurposing of this powerful enzyme that

has so revolutionized the application of genetics in modern medicine. The development of these

technologies has stimulated a renewed fascination with the possible applications of gene editing,
prevention and treatment of diseases, as well as conducting of research. The former possibilities

include restoring normal functioning in diseased organs, editing somatic cells, and even editing

the human germline to prevent genetic diseases from ever occurring. Human germline editing is

of heightened interest because the changes made to the DNA in the nuclei of reproductive cells

will be passed on from generation to generation; this magnifies the ethical concerns and the

possible dangers. Medical professionals will soon find themselves in the position of having to

address these concerns in their practice.

The nursing profession is guided by the foundational ethical principles of autonomy,

justice, beneficence, and nonmaleficence, all of which are firmly centered in the debate about

genome editing. The principle of autonomy is affected by the altering of the human germline.

Germline changes affect not only the person receiving the therapy, but potentially all of his or

her future generations who cannot consent to changes made to them before they were ever born.

Moreover, parents are often not able to make educated decisions surrounding lasting genetic

changes. Beneficence (doing good) is the primary motivator for our society to cure diseases and

make improvements to the human genome. Yet, if we favor autonomy over beneficence by only

making changes with proper consent then we would knowingly birth babies with preventable

diseases. This clash of the conflicting principles of autonomy and beneficence is what makes the

discussion of genome editing so complex.

The principle of nonmaleficence (do no harm) is perhaps the most difficult to uphold in

genetic therapy. Our current understanding of genetics allows us to look only one step ahead;

alter this gene and prevent that disease. This viewpoint is deceptively simple. In his book

Hacking Darwin,​ Jamie Metzl (2020) states that our genome and its relations to and interactions

with systems in our body and the outside world is so complex that we may never gain a complete
understanding. Changing one gene often has multiple effects which in turn affects how other

genes are expressed in a process called epigenetics. Combine epigenetics with an ever-changing

environment and the pursuit of predicting outcomes quickly becomes impossible.

Meztle provides a salient example of this type of dilemma with the rapid mainstreaming

of pesticide use after World War II. Pesticides at that time were used without reservation, and for

good reason: they prevented mass starvation in developing countries. However, decades after

especially harmful pesticides were banned, there are still high levels present in the ecosystem,

even in remote areas of Alaska where they were never used. Not only are these substances

causing alarming rates of cancer in the Innuit people, but climate scientists are also now

concerned that the cancer-causing chemicals may be disrupting all ecosystems around the planet.

This example portrays the dangers inherent with the implementation of any powerful technology.

Given our past, nonmaleficence will be a difficult principle to adhere to with the implementation

of gene therapy.

Literature

In 2015, a group of ethicists and scientists who developed CRISPR technology met in Napa,

California and made the first call for an examination of the ethical issues arising from gene

editing. They published an official request for the scientific community to focus its attention on

the development of guidelines to govern genome editing and its acceptable applications

(Baltimore et al., 2015). In their paper, “A prudent path forward for genomic engineering and

germline gene modification”, the scientists made several recommendations of steps to be taken

by the scientific community and policymakers. First, they argue for strong discouragement of

any attempt to alter the germline in humans in all countries. This will give scientists and

policymakers time to engage in a deep dialogue to weigh the risks and benefits of germline gene
editing. Second, they expressed the need for forums where scientists and policymakers can

discuss the inherent risks and benefits of gene editing. The group also stated the need for

transparent research that can be shared among countries to increase knowledge of germline

therapy and to determine which applications might be permissible in the future. Finally, the

group stated a need for convening a group including CRISPR developers and users,

policymakers, and genetic experts to take all the relevant issues into account and recommend

policies. The scientists concluded that this new era of scientific advancement requires public

trust, which can only be achieved through transparency and open discussion.

The Committee on Human Gene Editing: Scientific, Medical, and Ethical Considerations

was formed by the National Academy of Medicine (NAM) and the National Academy of

Sciences (NAS) in response to the promises and the concerns relating to the advances in human

genome editing (National Academies of Sciences, 2017). The goal of this committee was to

examine the issues surrounding genome editing in depth and to explore the current research

relating to the ethics of genome editing. The findings published by the committee are organized

on the individual level. They highlighted the need for determining the safety and efficacy of gene

therapy and weighing the benefits against the possible risks for specific diseases. These

treatments involve making a change to a portion of DNA which will affect their target’s function

while attempting to avoid changes in other portions of DNA. These unwanted changes in other

portions of DNA, called “off target events”, have the possibility of causing undesirable changes

in DNA function. They also stated the need for studies to identify which diseases could be

feasibly treated with gene modification, ways to identify off target events, and which types of

patients would be best for these studies. The findings of this committee were important because
they provided an understanding of where scientists need to focus their research in this newly

developed area of study.

Not all countries have strict regulations concerning the research in gene modification

therapy. A group led by Junjiu Huang at Sun Yat-sen University in Guangzhou, China, was the

first to effectively outpace the rest of the world in applied gene modification research by

preventing severe anemia using human cloning and genome editing (Cyranoski et al., 2017). The

researchers used cloned embryos to show how severe anemia caused by a genetic mutation could

be cured at its earliest stage of development by correcting the mutation with CRISPR

technology. The recessive nature of anemia made it challenging to find dozens of embryos with

the necessary gene mutations, so they cloned the embryos from an anemic patient’s skin cells.

This development, while revolutionary, is a cause for concern for genetic ethicists due to the use

of cloned human embryos. Most countries have strict regulations regarding the use of human

cloning in research and the group in China chose not to allow the embryos to survive past 14

days. This finding confirms the ability to prevent inheritable diseases using gene modification; it

also confirms the need to develop international standards about what is acceptable for genetic

research. Scientists also questioned whether the group had effectively answered the question of

whether any off-target events would occur if the embryos had been kept viable to term.

The field of genetics is growing rapidly and moving from high tech research labs into the

field of nursing. A study by Beamer (2017, p. 731), a professor at Northern Illinois School of

Nursing, examined the implications of genetics as it relates to oncology nurses. While these deal

with genetic screening for disease rather than genetic modification therapy, the insights provided

by this study provide tools for nurses to navigate ethical dilemmas. Beamer stated that patients

have a right to know or not know the results of genetic screenings for disease. However, the
situation changes if a test indicates that a family member of the patient would be at significant

risk for the disease. If the person who received the test chooses not to know the results, it is the

duty of the nurse to inform the affected family members of their status regarding the disease.

This study is an example of a complex ethical dilemma, and its solution provides nurses with a

pathway for solving issues as they arise.

Analysis of Relevant Issues

Much of the conversation around the ethical issues of gene editing focus on the human

germline because these changes would be passed on generationally. The implications are

compounded because they would affect not just the person who underwent the editing but future

generations. Many scientists are urging caution and only encourage the use of genome editing of

the human germline if it is to stop the spread of genetic diseases. These scientists acknowledge

the unknown risks involved with editing the germline and deem it only acceptable to conduct

research. Yet, there are many people who will push the limits and forge ahead past the safe

boundaries of research. For the time being, caution should be taken and germline editing should

be kept in the laboratory.

A concern is that no matter how much we can understand our own genome and the effects

that certain genes have on overall function, we still never know enough to mitigate all risks. The

human genome is much more complex than scientists had originally assumed. Genes often have

multiple effects and turning off one gene could change the effects of other genes. Additionally,

the human genome is in a complex relationship with other systems within the body and the

outside environment. The more that geneticists learn about genetics, the more they realize how

challenging it is to determine exactly what the effects of any edited gene will be. It could be that

gene editing will have devastating consequences for humanity. Many people focus on this and
maintain that gene editing should be avoided at all costs. The reality is that scientists will never

be able to completely manage the risks involved with genome editing. To completely avoid these

risks would be to ignore the rare opportunity to relieve humanity of some of its heaviest burdens.

The correct way forward is a responsible middle path that consists of many years of international

cooperation and tedious cost/benefit analysis. This will require open dialogue among

policymakers, researchers, nurses, and the general public.

Some geneticists (Braverman et al., 2018) are concerned that the genetic modification of

embryos could cause ethical problems even if initially done for therapeutic purposes. They

believe that the adoption of such practices could lead to a “slippery slope” and that eventually

wealthy parents could be given the opportunity to genetically enhance their offspring and give

them unfair advantages over the children of lower income parents. This could create a world

where the wealthy would have the ability to design their offspring to be more tall, attractive,

cognitively/emotionally intelligent, for example. It would further divide societies into economic

classes and would make it impossible for anyone without those traits to compete. This is a distant

but real threat. However, every path forward with new technology contains these slippery slopes.

This does not mean that the scientific community should cease all development, but that they

should be highly cooperative with lawmakers and work diligently to keep them informed of the

risks involved.

Summary of the issue

The development of genetic technologies like CRISPR and genome mapping and the

financial incentives for using them have caused lawmakers to become concerned about their

ethical implications. It is vital for nurses to remain engaged in this dialogue so that the safety of

their future patients can be protected. Nurses have a unique position in this issue due to their
intimate relationships with patients and their families. If the wrong decisions are made, it will

severely affect the therapeutic relationships between nurses and their patients. There is a great

deal of uncertainty as to how to govern these technologies and how the public should remain

informed and engaged with such a complex issue. Now it seems that the development and use of

these technologies is happening faster than society’s ability to maintain a dialogue about the

safeguarding of its most valued principles. These ethical questions and their various solutions

must be addressed, including a nursing perspective as our society comes closer to the reality of

our genetic future.

A review of the literature concerning the development of gene editing technology

indicates that it is advancing faster than ever imagined. This is accomplished by combining

complementary technologies like genome mapping and CRISPR. This rapid development has put

the scientific community in a precarious situation. They now can modify any gene in the body

but have a shallow understanding of the cascade of effects that may ensue. This means that there

must be an international consensus as to what is permissible in the application of these tools.

Furthermore, additional research needs to be conducted to explore the unintended effects of the

modification of specific genes. Another area that remains to be thoroughly investigated is which

diseases will be effectively and safely treated with gene modification. The advances in genetics

that have been made in the last half century are impressive, but there is still a long way to go

before diseases can be safely treated with gene modification.

Conclusion

Curing diseases before they occur seems overwhelmingly positive; the actual outcomes

are much more complex and fraught with ethical dilemmas. There are nearly as many opponents

to the use of this technology as there are proponents and the correct way to implement this
technology is far from clear. Yet, all medical advances come with ethical issues that pertain to

the risk/benefit ratio, societal implications, and regulation. The effects of this technology are so

widespread that it will take many years of cooperative dialogue to conclude how to safely

proceed. Already, committees have been formed in various countries to examine the risks of

implementing this technology. Healthcare professionals are not naïve to the process of

addressing ethical dilemmas that arise with new technologies; this issue however requires a

much more organized approach than ever before.

The next step would be to create a dialogue in the form of an international commission

consisting of leading scientists, policymakers, thinkers, and religious leaders. The task of this

commission would be to create a list of important questions regarding the future of genetic

engineering. The questions could include, as examples:

How can societies maintain widespread availability to the health benefits of gene modifying

technologies?

What limits should be set on the application of genetic technologies in the pursuit of disease

elimination?

Should parents be able to choose embryo in vitro fertilization based on traits not related to

disease?

What type of framework can be set in place to prevent abuses of genetic technology?

Once these questions are answered, a widespread and more informed dialogue can take

place at universities, government institutions, and community centers. Global dialogue may seem

like an insufficient measure to be taken against such a looming concern, but it is a vital first step.

Progression down this genetic path without widespread engagement could be devastating. If a
handful of scientists acting on their own enact changes to the human genome that has widespread

effect without educated input from others, a global reaction could mean stifling its revolutionary

potential to help humanity. The outcome of the imminent genetic revolution will be far more

positive if societies address these concerns together.

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Curr Beamer, L. (2017). Ethics and Genetics: Examining a Crossroads in Nursing Through a

Case Study. ​Clinical Journal of Oncology Nursing,​ ​21(​ 6), 730–737.

https://doi.org/10.1188/17.cjon.730-737

Cyranoski, D. (2017). Chinese scientists fix genetic disorder in cloned human embryos. ​Nature,​

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Ishii, T. (2017). Germ line genome editing in clinics: the approaches, objectives and global

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