Harvard Model Congress

Asia 2022

HUMAN GENOME EDITING

By Serena Fernandopulle

INTRODUCTION
Human gene editing, once a flashy plot device in science fiction, has been thrust into
public debate due to the high-profile imprisonment of a Chinese researcher in 2019
(Liu, 2020). The researcher, He Jiankui, had utilized gene editing technology to remove
a gene in an embryo, which would put the child at a lower risk of having HIV in 2018
(Liu, 2020). This was the first announced gene-edited human baby in the world, and it
raised questions not only about the ethics of gene editing embryos, but also what
legislation and rules should be in place for scientific research. He Jiankui was sentenced
to three years in prison, along with fines, by a Chinese court, setting a precedent for
future cases of human gene editing in China (Cyranoski, 2020).
With the recent creation of CRISPR-Cas9, an effective and accessible gene editing
He Jiankui in technology,
his human gene editing has become a more pressing reality (Cyranoski, 2020).
He Jiankui’s
lab. The researcher research has brought forth many ethical questions. Some of them might be
has announced questioning
to what consent could be for embryos who cannot give consent themselves,
have createdwhatthe qualifications or training should a researcher be required to have if they are
conducting human gene editing, and the biggest question: if we should allow human
first gene edited
humans, andgene he editing at all.
was imprisoned in
2019 in China for
his illegal research. E XPLANATION OF THE SSUE I
The Irish Times
Historical Development
Manipulating an organism’s genes is not a new technology. In fact, humans have
been doing it for centuries, since 30,000 BCE (Rangel, 2016). One example is the
Humans have been
domestication of dogs: our ancestors selectively chose more docile dogs to breed, thus
manipulating an
artificially choosing the genes they wanted (Rangel, 2016). Dogs then became friendlier
towards
organism’s genes humans because we chose those docile genes to be passed on. We changed the
genetic make-up of dogs through this process, controlling the germline.
since 30,000 BCE
Our modern method of manipulating genes, however, is much more precise and
efficient. It has taken a millennium for our modern-day dog breeds, but with recent
technology, we can target genes in a relatively short amount of time (Rangel, 2016).
There are three main methods to gene editing now: CRISPR-Cas, zinc-finger nucleases
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(ZFNs), and transcription activator-like effector nucleases (TALENs) (Carroll, 2017).

CRISPR-Cas is by far the most popular technology now, but the other two methods are
still used.
Because human gene editing is a comparatively new topic (He Jiankui in 2019 was
the first
Germline cells announced success), the history of this subject is just starting. There has been
– the
much
cells that passtheoretical
on discussion about this topic, but we are at an important crossroads to
decide how,
genetic material to and if, we will use this powerful tool in the future.
offspring
Scope of the Problem
Human gene editing is a very powerful tool. It could help us cure many deadly
diseases, could improve the lives of many, but could also lead to more inequality and
Embryos can unethical
now practices. Furthermore, because this is a relatively new issue, there is not
be geneticallystrong legislation or regulation in most countries.
screened for
CRISPR-Cas is the Medical Applications
diseases before
most popular gene
being implantedGene editing could be a treatment option for many diseases or conditions that
editing technology
currently are painful and deadly. Cystic fibrosis and sickle cell disease are among some
The Independent
now
diseases where gene therapy could become a treatment (Cring and Val, 2020). Both of
these diseases are recessive, so gene editing could be used to insert a dominant copy of
the gene so that it becomes functional again (Cring and Val, 2020). Not only could gene
editing be used to add a functioning gene, but it could also be used to correct a harmful
mutation (Cring and Val, 2020).
There is an important distinction between the two types of gene editing: germline
gene editing, and somatic gene editing. Germline gene editing affects not only the
individual, but also the individual’s offspring because the edit was in a reproductive cell.
Somatic gene editing only affects the individual because the edit was in a cell that will
not pass
Somatic cells on genetic material (Johnson, et al, 2019). Editing out a harmful mutation with
– the
cells that do not passgene editing on an embryo would not only protect the child, but also any of
germline
their offspring.
on genetic material to This tool could be revolutionary, possibly making it so that no human
suffers from a genetic disease again. However, this also has lasting effects, making it
offspring
more dangerous due to the potential for eugenics.
Somatic gene editing could help individuals suffering from diseases, and the edits
would not be passed on to their children. Indeed, somatic gene editing could become a
reality for treatment sooner than germline gene editing (Johnson, et al, 2019).
Gene therapy – the gene therapy is only used in clinical trials in the United States of America
Currently,
treatment of(“Gene
a diseaseTherapy,” 2019). Even though gene therapy is still seen as an experimental
through
treatment, it has the potential to help millions of people around the world.
manipulating the
genetic information Enhancement Applications
in a cell gene editing could also be applied to human enhancement, not just as a
Human
treatment for existing diseases. These enhancements could be increased strength,
immunity to viruses or bacteria, and height (Almeida and Diogo, 2019). Using genetic
editing in this way brings up many ethical and philosophical questions as well as
concerns of eugenics and potentially reducing the diversity of the human genome. A
diverse genetic pool is crucial for preventing recessive diseases from occurring in a
population as well as protecting a species from environmental changes. However, a

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study has argued that genetic engineering will not affect the human gene pool enough
for it to radically change the genetic diversity (Powell, 2010).
Not only could we enhance our abilities, but we could also change phenotypic
traits. Phenotypic traits are expressed because of a gene. Thus, with gene editing, we
could control what we look like. Currently, even though there is not gene editing done
on embryos, parents can select which genes they want in their child through genetic
screening (Saey, 2019). However, some traits parents look for, like height or
intelligence, are difficult to select for because these traits are controlled by hundreds of
genes, and there could be environmental factors affecting the trait as well (Saey, 2019).
This current example could show the challenges of even creating “designer babies,”
because many phenotypic traits are controlled by genetic variants at many different
sites. Furthermore, many genetic diseases can be spotted during a genetic screen of the
embryo, so gene editing would not be needed (Shwartz, 2018).
Ethical Considerations
Gene editing raises many ethical issues as well as the potential for inequity. This
technology, though groundbreaking, could be inaccessible to those with less financial
resources (Bergman, 2019). Furthermore, using gene editing for human enhancement
could widen the class divide, leaving individuals who cannot afford enhancements prone
to discrimination and a decrease in the availability of opportunities.
Even if governments prohibit gene editing for human enhancement, there is a grey
area of what is enhancement and what is gene therapy (Bergman, 2019). This complex
debate also brings up the question of what constitutes a disease or condition. There are
some traits like deafness where some see it as a disease, and some see it just as a
difference (Katz, 2020). Deaf people have a distinct culture and language, and some
individuals in the community note that it is not their deafness but societal
discrimination that makes navigating the world difficult (Katz, 2020). This way of seeing
what some consider a “medical condition” is an important demonstration that there
must be a diverse conversation about gene editing and that no community should be left
out.
Oversight and Regulation
Phenotypic trait–
Oversight is important since gene editing can be used not just as a tool but also as a
an observable trait,
deadly weapon. There is currently no international agreement on the regulation of gene
such as eye color
editing (Bergman, 2019), but many countries already have laws prohibiting human
germline gene editing, such as the United States and China (Bergman, 2019).
All countries prohibit the use of heritable human gene editing for reproductive use
(though there are a few exceptions in some countries for therapeutic purposes) (Baylis,
et al., 2020). 75 out of 96 countries researched for a study had explicit policies regarding
gene editing (Baylis, et al., 2020). However, there is some difference among countries
about germline gene editing for non-reproductive use (Baylis, et al., 2020). There are 11
countries that allow human germline gene editing for research purposes only, 23
countries that prohibit this research, and six with no specific policy. This study also
shows that there is policy in place in many countries, but not in all countries.
Researchers studying human gene editing still could move to a country with no policy,
or with weak enforcement, to evade punishment (Baylis, et al., 2020).

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Past Conference Discussions

In response to the issue of human gene editing, WHO created a new advisory
committee, with its first meeting in March 2019, tasked with “developing global
standards for governance and oversight of human genome editing” (“WHO Expert Panel
Paves Way for Strong International Governance on Human Genome Editing,” 2019).
This committee concluded that, currently, using human germline gene editing should be
discouraged (“WHO Expert Panel Paves Way for Strong International Governance on
Human Genome Editing,” 2019). Furthermore, the committee suggested that a registry
on all human gene editing could help in the regulation of this technology (“WHO Expert
Panel Paves Way for Strong International Governance on Human Genome Editing,”
2019). This committee is still ongoing and has emphasized the need for open,
transparent discussion (“WHO Expert Panel Paves Way for Strong International
Governance on Human Genome Editing,” 2019). During the committee’s second
meeting in August 2019, it agreed to support the first phase of creating the global
registry of human gene editing research (“Human Genome Editing Registry”). In July
2019, the WHO Director General agreed with the committee’s recommendation to halt
human germline gene editing (“Human Genome Editing Registry”).
Other Discussions or Actions
Council of Europe
Many countries have implemented their own legislation and policies surrounding
– an international
gene editing (Baylis, et al., 2020). However, the only international legal document
human rights human germline gene editing comes from the Council of Europe. The
regulating
organization with for the protection of Human Rights and Dignity of the Human Being with
Convention
memberregard
countries
to the Application of Biology and Medicine: Convention on Human Rights and
basedBiomedicine
in Europe (also abbreviated as the Oviedo Convention) specifically prohibits human
germline gene editing (Baylis, et al., 2020). The treaty states in Chapter IV, Article 13
that “an intervention seeking to modify the human genome may only be undertaken for
preventive, diagnostic or therapeutic purposes and only if its aim is not to introduce any
modification in the genome of any descendants” (Council of Europe, 1997). Many
countries in Europe have signed, ratified, and entered this treaty into force (Council of
Europe, 1997).

IDEOLOGICAL VIEWPOINTS
Against Gene Editing View
Gene editing is a highly controversial topic and does not necessarily have distinct
opinions depending on political ideologies. Thus, the two main ideological viewpoints
are those who are against human gene editing, and those who are for it. Individuals may
be against gene editing for several reasons, possibly due to ethical, religious, or political
beliefs. A study done in the United States argued that women, African Americans, right-
leaning individuals, older individuals, and people with less education were less
supportive of gene editing compared to other demographics (Weisberg, et al., 2017).
Even though they were less supportive, they were still overall positive about gene editing
(Weisberg, et al., 2017). Researchers concluded that this difference was due to these

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groups of people considering the potential risks of this technology more than other
groups of people (Weisberg, et al., 2017). Moreover, gene editing goes against some
individual’s religious beliefs, as some religions believe that changing a human’s DNA is a
power that only God should have (Joseph, 2016).
At the moment, many scientists believe that germline gene editing should be halted
A temporary
because it is a relatively uncharted and potentially high-risk area. However, many
scientists
moratorium onjust want a halt in order for discussions and more research to take place – they
human gene where human gene editing could potentially happen in a safe manner
see a future
(Bergman, 2019).
editing could give
the world enough For Gene Editing View
time to learn how
As mentioned before, gene editing is a complex topic with no clear ideology in
to handle thissupport of it. A study done in the United States argued that men, left-leaning
complete
power responsibly.
individuals, younger individuals, individuals with more education, and white and Latino
Americans were more likely to support gene editing (Weisberg, et al., 2017). Even
though some groups of people are against gene editing due to religious reasons, the
Vatican made statements in 2002 potentially supporting gene editing as long as it was
for treatment of disease and as long as it was safe for the embryos (Joseph, 2016). Many
scientists see less ethical issues with gene editing somatic cells than germline cells, and
there are currently clinical trials utilizing gene therapy with somatic cells (Cyranoski,
2020).

AREAS OF DEBATE
A Moratorium on Human Gene Editing
This solution is encouraging all countries to halt human germline gene editing
temporarily. The moratorium length could be at first decided by an expert WHO
committee, then chosen to be lengthened if more discussion is needed. Even though this
moratorium cannot be strictly enforced for all countries, WHO can encourage nations to
take this step.
A consensus between many scientists and leaders is that a temporary moratorium on
human gene editing could give the world enough time to learn how to handle this power
responsibly. This solution could provide time to create and implement regulations on
gene editing, increase the amount of knowledge about gene editing, and allow for
discussions about the ethics of this technology.
An argument against this solution, however, is that gene editing technology could be
saving lives, and that putting a stop to human germline gene editing research and
treatment would be hurting those people who could be helped by the technology.
Perspectives on this Solution
Most viewpoints of this situation, those who are for and against gene editing, would
agree with it because it is a good compromise between these two perspectives. A
moratorium would allow time for regulations and discussion, something that many
groups of people who support gene editing want as well as groups of people who are

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against gene editing. However, those who are against gene editing may not be fully
satisfied with this solution, as it still leaves the door open for gene editing in the future.
Most scientists and researchers would support this proposed solution as it would
allow the public who are hesitant to trust the technology more as well as allow time for
more guidelines regarding the ethics of gene editing. Most world leaders would also
support this solution as it would give them time to create legislation and regulations,
allowing for more control and oversight.
Creating a Committee to Oversee the Research Database and to Enforce
Compliance
Currently, there is a pilot database to track researchers studying gene editing and
their studies. Creating a specific committee to oversee this database and to make sure
researchers are properly declaring their studies could help add regulation to prevent
ethical issues from occurring. Creating this committee could help monitor the progress
of researchers and would ensure no illegal or unethical practices occur. Expanding this
database could also encourage more transparency in research, allowing for more
collaboration and accountability. This committee could be made up of experts and
would need cooperation from governments to keep up to date and to enforce
researcher’s compliance. However, an argument against this solution could be that it
relies too much on the cooperation of governments for enforcement and reporting and
would take a considerable number of resources to verify and track each researcher’s
work.
Perspectives on this Solution
How do we define
Creating this committee would be a solution many different perspectives would
what is considered
approve of. Citizens and governments wary of gene editing could feel more at ease that
a disease, and
there is a way to monitor research, and researchers who want to study gene editing still
what is biological
could do so, as long as they report their studies to the database.
difference?
However, some researchers could see having their research tracked in this manner
invasive. Furthermore, individuals who are against gene editing for ethical and religious
reasons would be against this solution as it doesn’t add any regulations and still allows
human gene editing to be conducted.
Outline the Requirements for Gene Editing
Outlining the requirements for utilizing gene editing could help prevent human
enhancement and the inequity of this technology, making it so that it can only be used
as a medical treatment. This solution could function in conjunction with the above
moratorium solution or by itself. Outlining the requirements for conditions or diseases
for gene editing would be recommended by an expert committee and then presented to
world leaders at a convention. The expert committee would be comprised of experts in
genetics and individuals from diverse communities so that many groups and viewpoints
of people are represented.
This solution mainly helps to regulate the research and use of gene editing
technology and could help prevent ethical issues in the future. A global discussion and
consensus about how gene editing should be used could help prevent fear over this new
technology and prevent the misuse of it.

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Trying to differentiate what is a disease and what is not could be an impossible task.
Thus, one could argue that this solution would only perpetuate societal beliefs that
anything deviating from normal is wrong. It can be hard to define the difference
between a condition and a biological trait, and this solution could create more ethical
issues as a result.
Perspectives on this Solution
This solution could be controversial as there are many different opposing
perspectives to it. Some scientist and government leaders may approve of it as it could
help eliminate the inequity of human enhancement, and it could help create more
specific regulation on gene editing. The Pope would also agree with this solution as he
has previously stated that he thinks it should be allowed as long as gene editing is safe
and for the treatment of diseases (Joseph, 2016).
Some perspectives that could potentially oppose this solution are members of
communities who have biological differences that some see as a medical condition. As
mentioned above, conversations surrounding this topic could further marginalize these
communities.
Making Gene Editing Illegal in All Countries
This solution helps eliminate the ethical issues surrounding gene editing since it
would make it illegal. This would be implemented by making a statement as the WHO
encouraging nations to enforce a permanent ban.
Gene editing is a new and powerful tool, and it has potential to cause massive harm.
Making gene editing illegal could help prevent a biological disaster from occurring.
Eugenics, old diseases coming back, and new diseases being created are some of the
dangers posed by gene editing (Shwartz, 2018).
However, gene editing also has the potential to cause massive good. Many incurable
diseases could be treated with gene therapy and children may not have to suffer from
genetic diseases again with gene editing technology. While preventing gene editing
could potentially prevent a disaster, it could also be preventing a medical revolution that
could save many more lives.
Perspectives on this Solution
Some groups, because of their religious or ethical ideology, don’t approve of gene
editing and will support this solution, whereas a majority of scientists and individuals
will oppose it. Many individuals, even if they are hesitant, are still positive about gene
editing potentially becoming a medical treatment. Many individual fears are not
inherently about gene editing but rather about the consequences of how the technology
will be handled (Weisberg, et al., 2017). This solution does not allow for any regulation
or flexibility, so many would find it to be a roadblock for scientific and medical
discovery.
Encourage More Human Gene Editing Research
This solution would be implemented by releasing a statement and by providing
more funding for scientists pursuing human gene editing research.
Much is still unknown about germline gene editing and its applications, so
encouraging more human gene editing research could help us further understand this

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new technology while also finding new medical treatment options. Gene editing could be
the future of medicine, and simply delaying it might not actually protect against the
potential dangers.
Although accelerating human gene editing could potentially help us find treatments
for diseases
NGOs – faster, it could also have serious consequences. Gene editing is a powerful
tool, and without the proper preparation of regulations, ethics reviews, and safety
nongovernmental
measures, it could turn into something harmful.
organizations,
usually non-profits or Perspectives on this Solution
charities
There is a mix of policy when it comes to germline gene editing research globally.
There are 11 countries that allow this type of research as long as it is not for
reproduction. These countries include the United States, the United Kingdom, and
China, among others (Baylis, et al., 2020). 23 countries explicitly have policy making
this research illegal, and a few countries from this list are Canada, Brazil, and Germany
(Baylis, et al., 2020). Countries that currently allow this research would most likely
approve this solution as it could provide more resources to their research, whereas
countries where it is illegal wouldn’t approve of it.
Many scientists do believe that pausing to understand all of the ramifications of gene
editing is important (Lander, et al., 2019). Even a pioneer of CRISPR-Cas 9,
Emmanuelle Charpentier, wrote an article arguing for a moratorium on gene editing
that was heritable (Lander, et al., 2019). The authors argued that time was needed for
important dialogues about how this technology would be utilized and how it could
impact us ethically, socially, and medically (Lander, et al., 2019).

11 countries allow BUDGETARY CONSIDERATIONS

germlineCosts
generegarding this topic mainly fall on each nation, and most costs would be
editing research
minimal, ifas drafting policy or regulations doesn’t require any extra resources. Partial
it is non-
funding by NGOs, governments, or private individuals may be needed to finance
reproductive
conferences for these discussions.

CONCLUSION
Gene editing brings up many major issues that WHO must address. These include
potential ethical and societal issues, and the need for more regulation and discussion.
WHO has an important responsibility to take into account all the facts and perspectives
available because it is one of the most influential organizations in this debate. WHO’s
actions and decisions have wide-reaching impacts, not on a global scale, but also on a
time scale. WHO can help dictate the future of gene editing and, thus, the future of
medical treatments.
Thus, it is crucial for delegates to come up with a comprehensive, thoughtful
solution. Collaboration on difficult issues like this is key, and often the best solution is a
combination of many diverse thoughts and viewpoints. Creative solutions delegates
come up with on their own are welcome as well. The world is relying on this committee
to make the best decision for it and future generations.

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GUIDE TO FURTHER RESEARCH

Much of my research came from articles from scientific journals. These articles
offered great detail, but also sometimes were quite complex. Thus, I found that articles
from accredited, science magazines were great for this topic as they explained the issue
in more plain terms.
There are many different kinds of information that will be helpful to you all as
delegates. I recommend understanding the difference between somatic and germline
gene editing, and in possibly looking into the solutions of past scientific ethical issues.
The mechanics of gene editing are quite fascinating, and I recommend looking up how
CRISPR works, but for the sake of the briefing I decided not to get into the details of the
biology. In my research, it seemed like the opinion I heard most from about gene editing
was from scientists and researchers. This is good because often these people are the
most knowledgeable and best equipped to talk about the topic. However, it is also
important to understand the viewpoints and opinions of others, such as world leaders,
religious
The mechanism of leaders, citizens, and business leaders, among others.
CRISPR is
facinating
Science in the News GLOSSARY
(Harvard University)
Germline cells – the cells that pass on genetic material to
offspring

Somatic cells – the cells that do not pass on genetic material

to offspring

Gene Therapy – the treatment of a disease through

manipulating the genetic information in a cell

Phenotypic trait – an observable trait, such as eye color

Council of Europe – an international, human rights

organization with member countries based in Europe

Moratorium – a temporary halt to a specific activity

NGOs – nongovernmental organizations, usually non-profits or

charities

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Baylis, Françoise, et al. “Human Germline and Heritable Genome Editing: The Global
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doi:10.1089/crispr.2020.0082.

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Katz, Sarah. “Why Deaf People Oppose Using Gene Editing To ‘Cure’ Deafness.”
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