Ethical Issues of Gene Editing

Ellen Wood
UWRIT 1104
 Gene editing is becoming more of a hot topic in today’s society and scientists are finding

out more about the future of gene editing daily. The day where parents can choose what genes

they want their child to have may be in the near future. The two types of gene therapy are

somatic and germline. Somatic gene therapy involves transferring a gene into a body cell that is

not the egg or sperm. Germline gene therapy involves modifying a current gene cell. A lot of

times this is used for enhancement purposes. This change on the egg or sperm cell affects the

germ cell (egg or sperm) and would be passed on to future generations. (Oberoi). Typically, this

is done for people with a trait of disease or illnesses in hopes that gene therapy can stop that trait

from transferring the disease. This is the type of gene editing that people tend to jump on board

with because they see the potential benefits. What a lot of people fail to see is the negative

outcomes and risks that come along with editing human genes.

Genes are edited through a piece of technology called CRISPR. This piece of technology

can be compared to a pair of scissors. The CRISPR is linked to the DNA that is going to be

edited and is cut or “unzipped”. While the DNA is open, scientists can make changes or

mutations. Cas9 is an enzyme that helps with this process of cutting genes and making changes.

It is what guides the CRISPR to the correct gene, so that a mutation can occur. (Saey).

According to Bryan Cwik, professor at Portland State University, there are a lot of ethical

issues that come with gene editing and that is something that supporters tend to look over

because they get excited at the fact that a genetic illness could potentially be stopped by gene

therapy. One of the issues with germline therapy is that of intergenerational monitoring. Because

germline gene editing affects multiple generations, there would have to be long-term follow-up

monitoring for the patient, their children and their grandchildren. A big issue with this topic is

consent. How do they get children to consent to being monitored? The answer to this question is
they use their parents’ consent until they are old enough to decide for themselves at the age of

18. Another problem with intergenerational monitoring are the laws regarded for medical privacy

such as HIPAA which provides security provisions of medical information. The reason for

monitoring older and younger generations is to note any health problems that could manifest in

the subsequent generations. This would require researchers to obtain genetic information for

descendants over multiple decades.

The effects of gene therapy are very unpredictable. There are a host of reasons why

people undergo gene therapy. If the goal in germline gene therapy is to cure a disease that will

more than likely be passed down generations, there is a chance that a different mutation could be

introduced. Since germline gene therapy targets the reproductive cells in order to stop a disease,

if there is an additional mutation introduced, it will be passed down to the next generation.

Because of this, there is no reason to try and risk changing someone’s DNA to prevent an

inheritable disease. (yourgenome.org). CRISPR is not a perfect method and has a lot of room for

improvements before people start using it to edit strands of DNA. Jocelyn Kaiser, a graduate of

Princeton University writes in her article for Science magazine about this issue. Kaiser explains

how CRISPR works better on dividing cells because the editing of the DNA goes through a

process called homology-direct repair. The problem is that most cells in the body are not

dividing cells, therefore there is more room for errors using CRISPR to edit a mutation instead of

a gene.

Another aspect of gene therapy is parent’s choosing what genes they want their child to

carry when they are born. This is one of the biggest reasons why most people think gene editing

is unethical. As you can imagine, this type of gene therapy is not cheap. It costs anywhere from

$373,000 to $1 million dollars to have this done which means only the wealthy parents would be
able to afford this therapy which leads to a lot more problems in society. (Mullin). It is not fair

for some parents to have the choice on what kind of kid they want their child to be like, while

other parents do not have a choice due to the extremely high costs of germline gene therapy. This

causes another reason to have a divide in social classes in the society we live in where most

things are dependent on your social class. (yourgenome.com).

There is a difference in gene editing though for enhancement purposes, and medical

purposes. Enhancement germline gene editing is the type that parents choose what traits they

want their child to have. People use the medical gene editing to prevent their child from having

the illness that was going to be passed down generations through genetics, diseases like sickle

cell anemia, and cystic fibrosis. (nationalgeogrpahic.com). Using gene editing for enhancement

purposes is where the problems of ethics and morals come into play. Josephine Johnston, director

of research at The Hasting Center, writes about how parents who have the option to control what

genes the human embryo possesses are at a great risk for disappointment. There is no such thing

as a perfect human, and there is no way to completely control who someone will be as they grow

up. Parents also miss out on the opportunity to see their child’s personal growth take place in

embracing who they are and the uncertainty that comes with a child’s unappreciable nature.

Another point worth noting about designer babies is how it would lead to more issues

with bullying and less of an appreciation for those who have disabilities. If parents had the

money and the choice to select what genes to give their child, they would choose the genes that

people favor; talent, athleticism, tall, thin, attractive, and the list goes on. It is hard to imagine a

parent choosing a gene that would pass a disability down such as down-syndrome. In a world full

of designer babies, everyone would be the same. Think about if you had a choice of what you

wanted to look like, and what qualities or characteristics you would possesses. No one would
choose to be born with a bad gene. Everyone would want the genes that make them the best! Due

to the extremely high costs of gene therapy though, not everyone is able to choose what genes

their child has. This would lead to society as a whole becoming less accepting of those who are

born with a disability. Those with disabilities already have a hard-enough time dealing with the

physical and mental limits they have, and by increasing the amount of “healthy” people in the

world, it would increase the amount of hardships they go through. (yourgenome.org).

Some would argue that gene editing is ethical for reasons such as preventing a genetic

illness. They use the CRISPR technology to cut the harmful DNA sequence and replace it with a

healthy strand of DNA. The problem with this though, as Eleonore Pauwels, a scholar of the

Science and Technology Innovation Program at Washington, DC writes, is that it has a lot of

implications. Using this technology poses a lot of risks that could produce a different mutation

from the one that was trying to be gotten rid of. Scientists have modified the genomes of insects

that carry disease, but there has not been as much practice done with humans who have genetic

conditions. Researchers and scientists have conducted studies in China where CRISPR

technology was used in 86 non-viable embryos. It only worked on 33% of the samples, and even

then, a lot went wrong with these cases. Although it has not been tested a lot on human embryos,

this is a striking statistic. That means of the 86 tested, only about 28 of them were successful in

being edited. Another trial took place in 2016 that attempted at providing resistance to HIV. It

was only successful in 25% of the 26 non-viable embryos and out of those, many of them ended

up with wrong mutation. (Rathi). Through these studies done, it is evident that even gene therapy

intended for medical purposes, really doesn’t do much good.

There are a lot of differing ideas on this topic and it has caused the issue of gene editing

in humans to become a big debate among medical professionals, researchers, scientists, and it is
becoming more and more prevalent among the general public. There was a debate in 2015 that

was hosted by the US National Academy of Sciences and National Academy of Medicine, the

UK’s Royal Society, and the Chinese Academy of Sciences that discussed the issues of human

germline editing. The con side of the argument argued that we should hold off on editing human

genomes until all the technical, and safety issues of the technology are figured out. It isn’t fair to

tell people that there has been a technology invented that will prevent genetic diseases from

being transmitted if it is going to transmit a new mutation. Another issue that has come up with

preventing genetically inherited diseases is the question of who is to say what disease medical

professionals can treat, and which ones they can’t treat. There is a lot of inequality in this

concept because researchers have showed that not every illness can be treated through gene

editing. Not all diseases are due to a mutation in the DNA. Diseases such as malaria, or yellow

fever are transmitted through another means one of which being mosquitoes. Those are the types

of illnesses that would not be able to be treated, so what makes an illness fit for genetic

engineering? (Thompson). Is it ethical to tell someone that they have a disease that can be

treated through genetic engineering, and then find out that it will not be treatable? Or the

technology fail, and the results do not come back positive?

Gene editing is a very complex topic that researchers are still figuring out information

about on a daily basis. This debate is one that is case by case for a lot of people. Majority of the

population would agree to gene editing if it would prevent an illness from being passed down to

someone’s generation. When talking about gene editing, you have to look at each aspect.

Although it sounds good to potentially being able to stop breast cancer from running through

families, but what risks are there in doing so? Maybe when the technology gets discovered

further, and it is proven that no mutations will occur, gene editing could be used as resource for
those who have a threat of obtaining a genetically inherited disease. Reasons such as cost, ethics,

insufficient technology and research, and a rise in a divided society should deter people away

from believing that editing genomes in a human is ethical and should be allowed. There is more

research to be done about this topic and a lot more for scientists to figure out before it comes a

more common practice.

Nonmaleficence, and justice and are the ethical principles that play a big role into why

gene editing in humans is unethical. Nonmaleficence is preventing needless harm.

(missinglink.edu). With all the possibilities that could go wrong while editing human genomes,

nonmaleficence plays a huge role. The way to fix this issue would be to either make editing

human genes illegal or wait until all errors can be clearly addressed. There is quite a big chance

that needless harm would be done if you were to go through gene editing today. All doctors are

held to a code of ethics and violating that would put them at a major risk of their job. Justice also

plays a big role in the ethics of gene therapy. Justice is being fair to all, treating people equally.

As we have discovered the cost of gene therapy is extremely expensive and only the wealthy can

afford to have this treatment done. This also holds true to those who were in previous

generations that suffered from a genetically inherited disease. Those who died in in the 1800’s

with polio or other diseases did not have the chance of getting gene therapy to potentially stop

their illness. The high costs of gene editing do not give justice to all people.

The first time that human embryos were edited was recorded in the Washington Post in

August of 2017. Ariana Cha who is a national reporter for the Washington Post wrote an article

titled “First Human Embryo Editing Experiment in U.S. ‘Corrects’ Gene for Heart Condition.” In

this article she mentions that scientists have become successful in editing the DNA of an embryo

to erase a heart condition that is common among young athletes. The issue that was found in this
case was the gene was just corrected and not changed or fixed. “Really we didn’t edit anything.

Neither did we modify anything, Mitalipov said.” Shoukrat Mitalipov is one of the lead authors

of the paper and researcher at Oregon Health & Science University. Through this case, we see

that the gene that was affected was dealt with for the time being, but problems could still arise.

The question we have to ask ourselves is “is this procedure worth the risks, and costs?” Due to

the fact that there is not 100% certainty with this procedure, scientists should weigh the benefits

and the outcomes closely. In this particular case, there was a benefit of the heart condition that is

common among athletes being fixed. However, there was that risk of it not being passed down to

future generations, or something going wrong outside of the corrected DNA.

As of now, CRISPR is facing a lot of criticism with the results. It is still relatively a new

concept, so scientists and researchers are still figuring out all the ins and outs of how it works.

Researchers and scientists stand divided over opinions on the effectiveness of CRIPSR

technology used in gene editing. Feng Zhang who is one of the pioneers of the CRISPR

technique writes that “It’s the tip of the iceberg.” He is very passionate about this new idea of a

way to change human genomes and potentially eradicate a lot of the genetically inherited

diseases such as cystic fibroses, and sickle cell anemia. On the other hand, Jennifer Doudna who

is a professor of molecular and cell biology at the University of California at Berkely and another

pioneer of the CRISPR technology believes that it will be many years before it proves to be

effective for human gene editing. She mentions that there have been thousands of gene therapy

trials that have occurred without using CRISPR. This technology is developing very quickly and

new information about CRISPR is being discovered by researchers and scientists is being

published almost weekly.

 Gene editing is a complex issue that people need to become more aware about. This is a

relatively new concept and will affect generations from all life spans. We have seen a huge rise

in technological advances and as that continues to happen, we will see advances in gene therapy

take place. Right now, it is still a very upcoming practice and there is still a lot of uncertainty

within. As researchers and scientists continue to learn more about CRIPSR and how effective it

is, the gene editing future will be determined. Doing research for this paper has proved that there

is a divide between those who view gene editing as an ethical, fair practice, and those who

believe that it is unethical and should not be legal in humans.

While I do believe that editing human’s genes is unethical and should not be allowed, I

do think there are very few instances where this practice would be of benefit. If scientists can get

all the technological issues figured out and be sure there will be no chance of mistakes, I think

that using gene editing for medical purposes could be helpful. I think there are cases where if it

would prove to be successful, stopping a genetically inherited disease would be extremely

helpful for a generation whose life may be endangered from mutated genes being passed down.

However, when it comes down to whether or not gene editing is ethical, there is clear

evidence for why it is not ethical. For reasons such as insufficiencies in technology, divide in

society, and unpredictable results, gene editing is unethical. Aside from these reasons, the

bioethical principles justice, and nonmaleficence do not line up with gene editing seen as being

ethical. As advancements are made and technology is improved upon, the results of successful

cases of both kinds of gene therapy. Even with successful cases, the ethics behind changing a

person’s genes, is not ethical. Each person was created the way they are meant to be and

changing those genes does not prove to be of any help unless it will 100% stop an illness or a

disease for multiple generations. Another factor that plays into stopping an illness is that it would
not cure the disease in the patient, it would just prevent the patients’ lineage from potentially

getting the genetically inherited disease. Because you cannot go back in time and change the

genes in a person who has been diagnosed previously, with gene editing you would only be

benefiting the future generations.

 Works Cited

“Beneficence vs. Nonmaleficence”

http://missinglink.ucsf.edu/lm/ethics/content%20pages/fast_fact_bene_nonmal.htm

Accessed 23 Apr. 2018.

Cwik, Bryan. “Designing Ethical Trials of Germline Gene Editing”

http://www.nejm.org/doi/10.1056/NEJMp1711000. Published 16 Nov. 2017

Accessed 2 Apr. 2018.

Darnovsky, Marcy. “Con: Do Not Open the Door to Editing Genes in Future Humans”

https://www.nationalgeographic.com/magazine/2016/08/human-gene-editing-pro-con-

opinions/

Accessed 2 Apr. 2018.

“Is Germline Gene Therapy Ethical?”

https://www.yourgenome.org/debates/is-germline-gene-therapy-ethical Published March

6th, 2015. Accessed 22 Mar. 2018.

Mullin, Emily “Tracking the Cost of Gene Therapy”

https://www.technologyreview.com/s/609197/tracking-the-cost-of-gene-therapy/

Published October 24th, 2017. Accessed 24 Mar. 2018.

Oberoi, Kiran. “Human Gene Therapy”

https://www.ndsu.edu/pubweb/~mcclean/plsc431/students99/oberoi.htm Published 1999

Accessed 29 Mar. 2018.

Rathi, Akshat. “A Highly Successful Attempt at Genetic Editing of Human Embryos Has

Opened the Door to Eradicating Inherited Diseases.” Accessed 09/04/2018

https://qz.com/1041609/a-highly-successful-attempt-at-genetic-editing-of-human-

embryos-has-opened-the-door-to-eradicating-inherited-diseases/ Published August 2nd,

2017. Accessed 13 Apr. 2018.

Saey, Tina “Explainer: How CRSIPR Works”

https://www.sciencenewsforstudents.org/article/explainer-how-crispr-works

Published July 31st, 2017. Accessed 22 Apr. 2018.

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December 4th, 2015. Accessed 09 Apr. 2018.