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Sydney
Ms. Barthel
Research Paper
Oct. 25, 2019
Genetically Modified Children

“Designer babies” is a term used to describe human embryos whose genes have been

altered to achieve or prevent certain physical and psychological characteristics. The amount of

time and money that must be invested to take these actions is high, however, new discoveries

within genetic technology has significantly reduced both of these aspects from the process.

Advancements in technology and scientific research over the last five years have been

revolutionary in the field of genetics and genomics, now allowing professionals to treat a number

of various genetic linked diseases and holds the potential to create customized children based on

parental preferences. Although this new and improved technology has opened the door for such

incredible scientific actions, the modification of children and their genetic code is currently in

the midst of an extremely heated debate in regards to ethics.

The process of creating a so-called “designer baby” begins with in vitro fertilization

(IVF). IVF is a form of conception that takes place outside of the body. There are a few different

options to choose from regarding the process of the treatment to ensure it fits the patient’s needs

best. Although it comes with a hefty price point and also bears a load of undesirable side effects,

it is still the most effective method of assisted reproduction and has begun to gain more

popularity in recent years.

The first step of this lengthy process is a consultation to see if a patient even qualifies for

the IVF procedure, and to determine if it is the right option for them (SCRC Contributor, 2016).

If the patient makes the decision to try IVF, then a sample of eggs must be harvested from a
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female to grow future embryos from. The individual can be either the mother herself or a donor.

The patient will be put on medication for multiple weeks to induce ovulation and ensure optimal

health for the harvesting procedure.

The next step is to retrieve the egg sample. With the help of an ultrasound, the patient’s

healthcare provider will insert a long, thin needle to collect eggs from the ovaries. It is important

to remember that not every attempt at IVF is successful, nor are all of the collected eggs mature.

Therefore, several eggs are taken at a time. The eggs are then sent to a lab where only those that

are fully mature get placed in a dish containing a nutrient-rich medium for temporary incubation.

They will reside here until deemed healthy enough to move to the next stage, which is

fertilization

If the eggs are cleared for fertilization, the sperm can then be collected. Similar to the

harvesting of eggs, sperm can either be donated or retrieved from a partner. Once collected, the

healthy sperm are separated from the semen fluid in preparation of being placed with the eggs.

From here, one of two fertilization methods are used to complete the fertilization process (Mayo

Clinic Staff, 2019).

The first method of fertilization is conventional insemination. During conventional

insemination, the isolated healthy sperm are simply mixed with the mature eggs within the

nutritional medium, which then gets incubated overnight. This is the most common procedure

used for fertilization in IVF treatments. The second form of fertilization is intracytoplasmic

sperm injection (ICSI). During ICSI, individual sperm are injected into each of the eggs. The

eggs are then placed in an incubator for at least twenty-four hours, similar to the conventional

insemination method. ICSI is less common than conventional insemination, but is typically used
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when there is an issue in the semen quality or when previous attempts at conventional

insemination have failed for any reason.

The final step in IVF is embryo transfer. Embryo transfer will occur within the week

following the incubation period. First, a small syringe containing one or multiple embryos is

attached to a long, thin catheter. Next, the catheter is inserted into the uterus. Lastly, the

embryo(s) are pushed out of the syringe, leaving them to attach and embed themselves in the

uterine wall (Mayo Clinic Staff, 2019).

Usually between twelve and fourteen days after the embryo transfer takes place, the

patient will take a blood test to see if the procedure was either a failure or success. The option to

try IVF again is always open if the pregnancy test comes back negative. If it comes back

positive, the whole process is complete and the mother will go on to a regular healthcare

provider to carry and raise the child or children.

IVF is primarily used as a treatment to assist those who suffer from infertility issues.

Infertility is the lack of ability to conceive children. Some common causes of infertility include

damage to the Fallopian tubes, impaired sperm production, sexually transmitted diseases,

cervical cancer, radiation-based cancer treatments, among various other reasons (Mayo Clinic

Staff, 2019).

Although IVF is a great solution to infertility and is becoming popular in the world of

genetics, it does come with some downsides that may have patients looking for other options.

First of all, it is a very costly process and many people have trouble finding ways to afford it.

This procedure, not including the price of medication or gene editing, has a national average cost

of $12,000 and is rarely found anywhere for under $10,000. In some areas of the country, IVF-
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specialty clinics can even charge a hefty price of $40,000. Medication used throughout the

procedure can range in prince, anywhere from $3,000 to $5,000 (Uffalussy, 2014). The cost of

gene editing would result in an additional $3,000 to $7,000, depending on the technology used to

diagnose genetic abnormalities.

This method of reproduction also carries a variety of health risks. Multiple births are a

common concern of those considering IVF. Multiple births can occur when two or more embryos

are inserted into the uterus. A patient has the option to only have one embryo placed, but their

chances of becoming pregnant are significantly decreased. Premature births occur when a baby is

born before the end of their full gestation period. These, as well as low birth weights, often occur

when using this method. Miscarriage is another concern faced when using IVF. A miscarriage is

the death of a fetus in the womb. The risk of miscarriage is approximately twenty percent, but

increases with the mother’s age. Ectopic pregnancies are not extremely common, yet the risk

increases with IVF. An ectopic pregnancy occurs when an embryo attaches somewhere outside of

the uterus, such as the Fallopian tubes. Embryos cannot survive anywhere other than the uterus,

therefore the pregnancy will not be successful. Aside from all of these possible complications,

IVF will cause temporary acute pain and discomfort, which is sometimes enough to scare

potential patients away (Mayo Clinic Staff, 2019).

The difficulty of this process and the overall time it takes to complete are a few other

reasons IVF could be rejected by patients. The total length of the process, starting from the initial

consultation and ending at the implantation stage, will take around six to eight weeks. The first

week is comprised of the initial consultation and any other meetings that may be necessary

between the doctor and the patient. Weeks two through five consist of taking the prescribed
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medication to induce ovulation and prepare the body for egg retrieval. Both egg and sperm

collection occur during week seven, and fertilization can take place sometime between weeks

seven and eight (SCRC Contributor, 2016). In addition, IVF holds the potential to be used to

manipulate human genes in order to treat or prevent genetic related conditions. If this is the case,

DNA will be edited after fertilization, meaning the embryo will have a complete set of genes.

IVF that involves gene editing must also include genetic testing of the embryos. These

particular tests are known as preimplantation genetic screening (PGS) and preimplantation

genetic diagnosis (PGD). Both processes begin with taking a sample biopsy, or a close

examination of cells or tissues, from the newly developed embryos prior to plantation, as the

names suggest. PGS is a practice of analyzing embryonic cells, looking specifically at the

number of chromosomes present. The presence of too many or too few chromosomes often leads

to fetal death. Similar to PGS, PGD is another practice of embryonic cell analyzation. However,

PGD searches for genetic abnormalities, such as genetic linked diseases (Brezina, 2013). The

current use of these tests allows patients and their healthcare providers to choose the most

healthy embryos with the best chance of survival after implantation. If designer babies do

become a reality, these tests will be used to determine what genes must be changed in order to

reverse the abnormality.

CRISPR/Cas9 (CRISPR) technology has been revolutionary in the field of genetics. The

acronym “CRISPR” stands for Clustered Regularly Interspaced Short Palindromic Repeats. The

name describes unique segments of DNA that appear in a genome (complete set of genes present

within a cell or organism), followed by the same segment in reverse. These genes account for
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nearly one percent of code throughout an entire set of DNA. The “Cas9” is in reference to a

specific enzyme that is necessary during the gene editing process.

These mysterious codes were first discovered in bacteria, specifically E. coli bacterium in

1987. Later on it was found within multiple bacterial species’ genes. These special repeating

segments functioned in bacterium similar to how a human’s immune system would work. Its

primary role was to act as a defense agent against viruses attacking the bacterium’s genetic

material (Shwartz, 2018).

The CRISPR genes function by producing Cas enzymes to carry out a wide array of

tasks. Enzymes are objects that are created by organisms to act as catalysts — substances that

increase the rate of a chemical reaction — for use in an organism’s biochemical processes. The

Cas enzymes specifically are designed to cut DNA at certain locations. These locations are

specified by the DNA code itself. The Cas enzymes cut out the virus’ DNA and any of its own

genetic code that has been affected by the virus. There are multiple variations of the Cas

enzymes, such as Cas3 and Cas6, but Cas9 is the most recognized and most used by geneticists.

All Cas-based enzymes work to cut DNA and, in bacteria, defend the individual from invading

viruses.

After years of research and vast discovery, scientists eventually learned how to imitate

this complex system for use as a gene editing tool in humans, as well as other eukaryotic

organisms. Eukaryotes are organisms that consist of multiple cells, with each containing

chromosomal DNA that is located within a distinct nucleus; bacteria are classified as

prokaryotes, or single-celled organisms.

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As an immune system in bacteria, the CRISPR process consists of three stages, the first

being adaptation. Adaptation begins with the insertion of new spacers — regions of DNA not

responsible for gene expression — along the CRISPR locus. A locus refers to the position of any

particular gene on a chromosome. These spacers allow the CRISPR genes to recognize new

viruses. The second stage, expression, prepares the system for defense by expressing several Cas

genes and using RNA to transcribe, or copy, the CRISPR genes into CRISPR RNA (crRNA).

Ribonucleic acid is material essential for DNA replication. Interference, the final stage, targets

the DNA form a virus, both recognizable and unrecognized, and destroys it with the crRNA and

the Cas enzymes (Rath, 2015).

This replicated system, while used in humans, would modify genomes rather than fight

off viruses. Therefore, the way in which the system works would greatly differ from the process

present in bacteria. The use of CRISPR in human genome manipulation begins with collecting a

sample of one’s DNA and scanning the individual’s unique code for the exact location of the

genetic error. Once the location has been determined, the issue can be assessed and a specialized

solution can be formed for the patient. From here, a strand of RNA that matches the erred

segment of DNA is either ordered from or created in a lab. This RNA, called guide RNA

(gRNA), is placed in a cell’s nucleus to activate the Cas9 enzymes, as well as designate the area

of problematic DNA. The enzymes are directed by the gRNA to the potion of flawed DNA , in

which they proceed to cut at the desired mark. At this point of the process, CRISPR deletes the

segment of DNA that was specified by the gRNA (NHGRI Staff, 2017).

Depending on what solution has been assigned for the patient, the process can end here.

However, if new DNA must be added to change the original sequence in order to correct the
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issue, then the CRISPR system can be programmed to do so. If this is the case, a correction DNA

template is added into the cell’s nucleus, in addition to the gRNA and Cas9 enzymes. It is

inserted into the original DNA sequence once the Cas9 enzymes have cut and deleted the flawed

segment. Finally, the new addition of DNA attaches to the original strand and the process is

complete (CRISPR Therapeutics Staff, 2018). This entire system occurs in only a few select

cells. However, being that cells replicate themselves and their DNA, the new cells produced from

these treated individuals will contain the corrected DNA as well. All cells that are replicated from

these will also house the new code, and the process will continue from that point forward.

Multiple cells are treated at a time, and this can occur in one of two processes. The first

procedure is known as “ex vivo cellular editing.” Ex vivo cellular editing occurs outside of the

patient’s body. To begin this process, cells of the problematic region are removed from the

patient’s body and taken to a lab for the treatment. Next, the CRISPR system is inserted into the

cell’s nucleus to make the desired change or changes. Once the gene modification process is

complete, the cells are then returned to the body to continue reproduction and the spread of the

new, corrected DNA.

The second treatment option is in vivo cellular editing. This process takes place within

the patient’s body, opposite of the en vivo procedure. The first step of in vivo manipulation is

packaging the CRISPR technology into a delivery system. This package is typically a lipid

nanoparticle (microscopic organic compounds comprised of fatty acids, including many natural

oils, waxes, and steroids). These particles are carefully inserted into the patient for transportation

of the CRISPR system to a specific location (CRISPR Therapeutics Staff, 2018). The location

depends on which part of the body the issue lies, but it is typically inserted into the liver. After
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reaching its destination, CRISPR becomes active and begins the process of genetic editing. The

treatment is complete once the correction has been made.

Although this all may sound like a time consuming and complex process, it is relatively

quick and simple when compared to any previous technology used for gene editing. In addition

to its speed and lack of intricacy, CRISPR is also less prone to error than all of its predecessors,

due to the fact that there were so many more steps involved in the prior methods. CRISPR was

found to be six times more efficient overall when put up against these other systems used in the

past (NHGRI Staff, 2017).

This technology is used today in somatic cells — those of a grown, living person — to

treat genetic diseases, and for other procedures in cellular engineering. Using this method only

changes a select number of cells in an isolated area of the body, and only cells that duplicate

from these cells contain the edited DNA. As of now, the United States, among several other

countries, have agreed that human germ line modification is a problematic path as far as ethics

go, and should not be attempted. Human germ line modification differs from somatic cell

modification by changing the DNA of reproductive cells, or the sperm and eggs. Changing these

cells changes the DNA of every cell in that individual’s body.

If genetic editing in children becomes a reality, it would most likely be used to eliminate

or prevent undesired traits, rather than adding any new ones in. The traits most likely to be

modified would be genetic linked illnesses. Mutations found within genetic coding are the cause

of nearly 7,000 conditions and diseases (Duggan, 2019). Many genetic linked diseases have the

possibility of being cured with the help of CRISPR technology. When using CRISPR to add or
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delete certain segments of an individual’s genetic code, illnesses can be treated or prevented even

before the diseases’ genes are expressed.

The search on a cure for cancers or the uncontrolled growth of abnormal cells in any

region of the body, has been long running. Many scientists believe that researching the genetic

treatment of cancer is a priority for scientists studying this technology and its capabilities. There

are studies currently taking place in both China and the United States on cancer and possible

gene editing treatments. These trials are working specifically with esophageal cancers. While

using CRISPR for cancer test treatments, the genes that build and instruct a protein known as

PD-1 are removed. The PD-1 proteins attach to immune cells and instruct them not to fight off

invading cancer cells (Fernández, 2019). Therefore, deleting the genes that produce this protein

would decrease the number of the PD-1 proteins present in the body. None of the trials have been

successful yet. However, they have just begun as recently as April 2019, so the studies are still

ongoing.

Genetic therapy is another potential treatment for those with cystic fibrosis. Cystic

fibrosis is a hereditary disease, meaning it can be passed on from parent to offspring, or even

other descendants through genetics. This disease specifically targets the lungs and organs within

the digestive system. Cystic fibrosis occurs when a mutation in the CFTR gene is present. The

disease will cause the body to produce mucus that can clog the lungs and areas of the digestive

system, such as the pancreas. This mucus is extremely thick and sticky, leading to a number of

undesirable symptoms, some of which include frequent coughing, difficulty breathing, gallstones

— hard, abnormal crystalline masses formed inside the gallbladder — and chronic nasal

congestion, among several others. Cystic fibrosis is often a life threatening disease; on average,
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those who suffer from the disease have shorter life spans than those without it (WebMD Staff,

2019).

Blindness is yet another condition that genetic experts are looking into for the use of

genetic treatment. Sight impairments that are hereditary, such as Leber congenital amaurosis, are

often caused by a single mutation, but they do not have any treatments available. Going into an

individual’s genome and correcting the error, however, is a viable treatment according to

scientists studying it (Fernández, 2019).

Color blindness specifically is a sex linked trait, meaning the genes responsible for that

trait are located on a sex chromosome or the X and Y chromosomes that determine gender. In the

case of humans, more men have color blindness than women. There are three types of color

blindness: blue-yellow, red-green, and total color blindness. Treatments for blue-yellow and total

color blindness are still being studied. However, red-green color blindness has been successfully

treated in squirrel monkeys (Soft, 2013). The scientists behind these works are attempting to do

the same in humans.

Numerous blood disorders, such as sickle cell anemia and beta-thalassemia, both

disorders that cause a lack of oxygen transport in the blood, are hereditary and could possibly be

treated with genetic modification. Trial treatments are currently taking place in both Europe and

the United States, which began in February of 2019. The procedures for these treatments begin

with collecting stem cells from the patient’s bone marrow, which is the spongy tissue inside of

bones. Stem cells are cells that have the potential to develop into many different types of cells.

CRISPR technology is then used to manipulate the stem cells’ genetics to grow them into fetal

hemoglobin cells, the oxygen-carrying proteins found in fetuses that carry oxygen well
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(Fernández, 2019). The hemoglobin would replace the oxygen that was lacking from the disease.

This would be a form of en vivo editing, because it is taking cells from the body, changing them,

and then reinserting them into the patient.

Huntington’s disease is a genetic-linked, neurodegenerative disorder where cells within

the neurons of the brain lose their functionality. This condition affects one in every 15,000

people around the world. It only takes a single mutation on the HD gene to activate the illness.

The disease begins to cause damage to the brain around the age of 35 and 40. The condition is

deadly, and patients are given around twenty years to live once it becomes active (YG

Contributor, 2015). That leaves those who suffer from the disease an average lifespan of around

60 years. There is currently no cure available for individuals who have Huntington’s disease,

although there has been talk throughout the scientific community about potentially utilizing

genetic treatment

Acquired immunodeficiency syndrome (AIDS) is a condition brought on by the human

immunodeficiency virus (HIV). HIV is a virus that attacks immune cells, leaving those who

suffer with less defense against other illnesses. Just over one million people in the United States

currently have HIV, with another 38,000 contracting the infection annually. There are

medications that can lessen the symptoms of HIV and prevent the spread of the infection. There

is no cure for HIV, so once a person becomes infected, they will remain infected for life.

If it remains untreated, the HIV will destroy the CD4 and T cells that are located

throughout the immune system. This will result in the contraction of AIDS within about ten

years. There are almost 18,000 cases of AIDS in the United States currently (Planned Parenthood
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Staff, 2019). Similar to HIV, there is no cure for AIDS. Eventually, this disease will overrun the

immune system and lead to death.

Gene editing could be used for curing, or at the very least, preventing the HIV illness.

The DNA located inside of the HIV virus attaches itself to the human DNA. With this being the

case, curing the disease involves the CRISPR system cutting and removing the virus’ DNA from

the patient’s DNA located within their immune cells. For prevention of the virus, an edit to the

CCR5 gene —a gene that instructs for the production of a specific protein within immune cells—

would be made. This modification would change the shape of the protein that is produced,

keeping the HIV virus from binding to it in an attempt at attacking the valuable immune cells

(Fernández, 2019).

Duchenne’s muscular dystrophy (DMD) or the deterioration and loss of function of cells

in the body’s muscles— occurs when a mutation of the DMD genes are present. These genes

control the production of specific proteins that are responsible for muscle contraction throughout

the entire body. Therefore, when a mutation forms within the genetic code the proteins are

denatured and those with the disease suffer from severe muscle degeneration. Genetic therapy

could potentially be the cure for this illness, being that there are no treatments currently

available. Test treatments are currently being conducted on mice in the United States using the

CRISPR system to correct the problematic DNA. DMD can be caused by multiple mutations

across various loci, the particular locations of genes. Due to this mutation, scientists have used

CRISPR to cut and edit the twelve segments of DNA where the DMD mutations most often

occur (Fernández, 2019).

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The use of CRISPR technology to add in traits that were not previously present in a

genome would be less likely than removing or preventing any undesirable traits. The overall

appearance of an individual is composed of several different genetic traits that parents may want

control over if genetically modified children become a reality. Such changes and their processes

are often referred to as “enhancements” in the field of genetics. Physical characteristics such as

height, weight, hair texture and color, eye color, facial features, and even skin color can be

determined with gene editing. Gender is another trait where parents may prefer one outcome

over another. In most cases, when based off of geographical location and many cultural

standards, males are often preferred over females (Darnovsky, 2016). For example, parents may

want their child to be a male, as well as a star basketball player. In this case, the genes that are

responsible for the individual’s gender and height may be enhanced. Doing so would ensure that

the individual is a male and it would also make them a few inches taller than they would have

been otherwise, in hopes of providing a little extra skill in the sport.

In addition to physical changes, psychological enhancements could be made through the

aid of genetic modification as well. If parents wished to have their child attend a high ranked

college or score with an above average IQ, then genes relating to the individual’s intelligence

could be manipulated to achieve the desired results.

Currently the use of gene therapy, which is the changing of genes within grown adults, is

marginally accepted across the globe. This is mainly due to the fact that gene therapy edits

somatic cells rather than reproductive cells. This means that the genetic modifications that were

made are not spread throughout the entire body and cannot be passed onto any offspring

(Anderson, 2018). Another cause for its acceptance is the belief that most adults are responsible
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for making their own medical decisions, unlike children who rely on their parents to make

medical related decisions.

Several nations over the last twenty years have written laws prohibiting the modification

of the human germ line, with the United States joining the others in 2016 (Kaiser, 2019). As

previously mentioned, human germ line modification is the editing of embryonic genetic code.

These actions are deemed unethical by many with the argument that embryos have the same

rights as a grown, developed human, and that these rights should not be violated. Additionally,

during the process of IVF, many embryos do not get implanted and are often left frozen, never to

be used. In some cases, the extra embryos are ultimately destroyed for lack of use. This raises

concern among people all around the world, including those both involved and uninvolved in the

scientific community. The debate over the ethics regarding human germ line editing is complex,

containing many different opinions and exceptions in some arguments.

Genetic modification has recently become a major part of the world’s modern medicine.

Various types of disease and other genetic linked conditions can now be treated through genetic

editing. Additional studies are taking place currently, allowing for the discovery of even more

treatments to such illnesses. The applications associated with genetic technology are rapidly

advancing, causing both the time consumption and price point of these procedures to

significantly decline. However, the debate over the ethics of genetic modification in children is

still ongoing, preventing some of the potential uses for CRISPR technology.