My Reflection Page

-
Rylie Brown
Dordt University
KSP

Human Genetic Engineering

Reflection on Human Genetic Engineering

Throughout my life, I have always found it difficult to enjoy social science classes like psychology.
However, lifespan development seemed like a safe class that would tell me about children and adults and
their habits. I thought it could be interesting to learn more about the life cycle and hopefully be a little
more prepared for when I have children of my own. Although I did enjoy the class much more than I
expected, I was not prepared to be so interested in one particular aspect – the Human Genome Project. It
felt like something waiting to be discovered by me. It involved chemistry, genetics, and human behavior –
a perfect blend of social and hard sciences. I eagerly jumped at the opportunity to do a more in-depth
research study and was excited to dig deeper into something that related to engineering but was really
outside of the typical chemical engineering realm. As I began to uncover more about the Human
Genome, I became fascinated with its founder, Dr. Francis Collins, and his journey to Christianity. His
journey played a large role in the moral and ethical outcomes of the Human Genome Project and showed
me how different the results could have been if a different founder had been at the forefront. While
human genetic engineering is fascinating in itself, the ethical and political agendas that surround it are
even more intriguing. Throughout my research project, I began to understand how grey some topics can
be and how the line of black and white isn’t as clear as I once thought. This prompted me to title my
project, “How Much is Enough?” I was blessed to be able to present this work as part of the National
Conference for Undergraduate Research in April of 2019. Being surrounded by so many young successful
students motivated me to continue to pursue my passions. It also made me realize that the more
passionate and dedicated I am to the project, the more I will enjoy the process and produce a much
better result. Overall, the science behind human genetic engineering while complex is nowhere near as
complicated as the ethics.
Human Genetic Engineering
How Much is Enough?

Rylie Brown
Kuyper Scholars Contract
Dr. Bruce Vermeer
Abstract:
The Human Genome Project was established with the intent of mapping all the genes of

human beings, known as our genome. While this was an amazing achievement, it was only the

beginning of a much larger and widespread plan towards improving human health. Although the

goal of this project was to benefit society, it also introduced ethical complications. Even though

the Human Genome Project has been the foundation for more readily preventing and treating

diseases and disorders, it has also opened the door to possibilities such as the “designer baby.”

This is the genetic engineering of an embryo to exhibit particular traits, such as lowered disease

risk or gender. Although it may be ethical to avoid health concerns, choosing harmless features,

such as athleticism and height, is an ethically irresponsible use of genetic engineering. Through

my research, I was able to see the benefits of genetic engineering firsthand by examining Avera

test results from a patient regarding medication use for their genetic makeup. I was also able to

learn of the insurance, cost, and privacy issues of genetic engineering by interviewing a local

doctor, Dr. Dan Vanden Bosch. In addition, Francis Collins, the leader of the Human Genome

Project, was a main source of knowledge regarding the ethics of genetic engineering. These led

me to conclude that although many benefits have arisen from the Human Genome Project,

limitations must be put in place to prevent the exploitation of genetic engineering. The results of

the Human Genome Project should only be used to aid prevention, treatment, and research of

disorders, diseases, and conditions, not choose benign characteristics.

 The year is 2050 and you have just been involved in a life-threatening car crash. You

need organ transplants to save your life. In the past it has been hard to find a donor at all, let

alone one that your body will accept. But now, the process of human cloning is commonplace,

and fortunately for you, a clone of yourself exists. The doctors send for that clone to be brought

in and used for organ harvesting. This is the plot of the 2005 science fiction movie, The Island.

But is this really just science fiction? In the movie, the year is not 2050, but rather 2019.

Although we are not at the point of making human clones for organ harvesting yet, it is no longer

just science fiction. You make think this to be ridiculous, but the possibility is closer than ever

before. We started with cloning a sheep. We followed it with cloning numerous other animals.

What’s to stop us from cloning human beings? Is it possible for this science fiction to become

reality in our lifetimes? With new technology being introduced every day, human genetic

engineering could make this possible. And, this all began with the Human Genome Project. Now,

this is not what it was intended for, but with results like designer babies we have opened the door

for numerous other ethically questionable outcomes. However, the results of the Human Genome

Project should only be used to aid prevention, treatment, and research of disorders, diseases, and

conditions, not choose benign characteristics.

The Human Genome Project (HGP) was established with the intent of mapping all the

genes of human beings, known as our “genome” ("An Overview of the Human Genome

Project"). Similar to other advances in science, the human genome project was a culmination of

many, much smaller scale steps of genetic advancements. Just like our current ability to travel

into space began with the Wright brothers first flight, the human genome began with mapping

the fruit fly’s genetic makeup and studying mutations. The project was a 13-year effort to read

the information of the human chromosomes (Consortium). With an initial guess over 100,000
genes, the project showed that our species only has 20,000-25,000 protein-coding genes

(Consortium). Researchers confirmed the existence of 19,599 protein-coding genes and have

identified a possible 2,188 more. Although the human genome sequence is finished, it is not

perfect yet. There remain 341 gaps which cannot be identified with current technology. As

technology advances and more research is done, the human genome sequence could have those

gaps closed (Consortium). The HGP allowed us to determine the order of our genes or the bases

that make up our DNA, as well as the locations of genes for major sections of our chromosomes.

In addition, linkage maps through which inherited traits can be tracked over generations were

shown through the Human Genome Project ("An Overview of the Human Genome Project").

The detailed information about human genes and their location, structure, and function is

the ultimate product of the Human Genome Project ("An Overview of the Human Genome

Project"). While this is an amazing achievement, it is only the beginning of a much larger and

widespread plan towards improving human health. With the ability to understand human genetics

and find target genes that are the cause of many known health risks, one would be able to further

improve medicine and treatment to reduce serious health concerns ("An Overview of the Divsion

of Intramural Research"). Completed in April 2003 ("An Overview of the Human Genome

Project"), the Human Genome Project has initiated a plethora of medical and technological

advances. They even made the results available on a free public database so that scientists around

the world could begin using this information right away ("An Overview of the Human Genome

Project"). They wanted to make sure that the project they had finished would be used as much

and as quickly as possible in helping humanity.

Research has developed new paradigms for mapping, sequencing, and interpreting human

genomes. Innovative computational tools have risen for the large quantities of genomic data
("An Overview of the Divsion of Intramural Research"). Dr. Francis Collins, the director of the

National Human Genome Research Institute, says that the human genome is a “shop manual”

that can give us “an incredibly detailed blueprint for building every human cell” ("An Overview

of the Human Genome Project"). Interestingly, Dr. Francis Collins is an atheist turned Christian

who now argues that God created life, and the HGP can be a glimpse into our Creator’s mind. In

addition, it can be helpful to understand the way certain cells work in order to better help society.

Medicine and biomedical technologies greatly benefit from knowing the original design and

mechanisms of our bodies. The Human Genome Project has also developed and applied DNA

microarray tech for the analyses of gene expression. Scientists are able to identify genes

responsible for some human genetic diseases. Due to the information, novel approaches to

diagnosing and treating genetic diseases are arising. With the ability to identify those specific

genes responsible for certain diseases, doctors can better understand, prevent, and treat diseases

that were a mystery before. Humans are 99.9% identical in genetic makeup; therefore, that 0.1%

is key to understanding the causes of diseases ("Frequently Asked Questions About Genetic and

Genomic Science"). By being able to know which genes are controlling which factors, doctors

have almost unlimited scientific advancement before them as they begin to unravel the mysteries

of the genome. With great power also comes great responsibility, however, and one must

consider the ethical implications of all the research and outcomes of such projects. As genetic

engineering of humans can be taken many different directions, society must wrestle with what

are the appropriate uses of this knowledge.

To understand the Human Genome Project and its intended outcomes, one must take a

look at its creator and leader, Dr. Francis Collins. He not only led the Human Genome Project,

but was also the director of the National Human Genome Research Institute. He began his
genetic career by earning a reputation at the University of Michigan as a “gene hunter”

(Paulson). While in graduate school, Collins consider himself to be an atheist (Paulson).

However, after a conversation with a hospital patient, he began to question his views and

investigated various faiths. In the end, he used Mere Christianity by C.S. Lewis as the basis for

his religious views (Paulson). Collins describes the human genome as “the language of God”

(Paulson). He believes it is a thought-provoking way to consider where this all came from.

Therefore, Collins is very careful to acknowledge the fact that human endeavors must be

considered from an ethical perspective as well as their contribution to scientific advancement

(Paulson).

During an interview with Dr. Francis Collins, he was asked about his position on stem

cell research. Although stem-cell research is not exactly the same as the Human Genome

Project’s outcomes, it definitely falls under the same category of what some would call “playing

God” (Paulson). I would argue that Dr. Francis Collin’s answer on the morality of such research

gives great insight into his worldview and ethical assessments on all scientific efforts. He

believes that the first cell that forms between an egg and sperm ought to be treated as human, and

thus, the creation of a cell purely to understand research questions is unethical (Paulson).

However, many of these embryos already exist in freezers at in vitro clinics all around the world.

During the process of in vitro, there is always more embryos made than you can implant at one

time. The plausibility of the great many of these embryos ever being implanted is extremely low.

Therefore, Collins asks which is more ethical – to throw them away or use them for research? Is

it more ethical to use these embryos to help people? (Paulson).

Another topic related to human genetic engineering that Collins discusses is the idea

cloning. Cloning is the act of taking an egg cell without a nucleus and another cell, perhaps a
skin cell, and combining them. By adding electricity, the skin cell then reverses back to

becoming any type of cell (Paulson). Now, the cell can be used by a person who gave the skin

cell in the first place to become pancreas cells for their diabetes or neurons for their Parkinson’s

disease. Although the term cloning often has a bad reputation, neither the skin cell nor the egg

cell without a nucleus would be considered to have any moral or legal status as a human being.

And, the combination of the two could help save a person’s life (Paulson). Therefore, Collins

argues that it is completely ethical to perform this kind of cloning. What is not ethical, is the

implantation of this cell into a uterus to create a cloned person. Collins makes it very clear that

implanting this cell is “something that we should not and must not and probably should legislate

against” (Paulson).

While there is variation between cloning, stem cell research, and genetically engineering

embryos, they have all been possible through the Human Genome Project. Once the blueprints

for humans was discovered and mapped, the possibilities began to erupt. The leaders of the

Human Genome Project, specifically Dr. Francis Collins, desired to use their discoveries to help

society and be able to limit health concerns. The Human Genome Project led to many

technological, scientific, and medical outcomes including genetic testing for medication,

predisposition testing, and the possibility of designer babies.

Using genetic testing to offer a better medication fit is one of the outcomes of the Human

Genome Project. As of right now less than 50% of patients with depression respond to their first

treatment (Bosch). Up to 30% discontinued use of treatment based on the side effects (Bosch).

Being able to compare a person’s genetics with various medications would allow for time spent

finding the right medication to be reduced, side effects to be limited, and patient satisfaction to

be increased. The genetic testing is fairly inexpensive already, only a couple hundred dollars, and
it only takes a week to get the lab results back (Bosch). The basic process includes taking a

cheek swab of the patient and sending it into the lab to be tested. The lab will compare that

individual’s genetic markers and overall genetic makeup with a variety of drugs to see how the

two will interact (Bosch). The lab will then send back a packet indicating if the patient should

“use as directed”, “use with caution”, or “use with increased caution and with more frequent

monitoring” (Bosch). Basically, the test puts each medication of each type into separate columns

based on how well the patient will react to each medication.

According to Dr. Dan Vanden Bosch, this is just the beginning as this procedure is not

common knowledge and is not requested very much. As time goes on, he imagines that it will

become cheaper and there will be more medications they can test for (Bosch). As of right now, it

works with a variety of medication types, but is best for antidepressants and pain relievers. In the

future, it should be possible for any medication to be tested including birth control which is one

of the most common medications people find difficulty in choosing. There is little to no risks and

the patient is in complete control of choosing to have this test done or not. The only concern

Bosch stated was possible privacy issues. He used the example of a criminal being caught based

on information other members of his family had sent to a DNA testing agency (Bosch). Overall,

however, genetic testing for medication is fairly accepted with few ethical concerns.

Another use of genetic testing is to find predispositions towards certain diseases. The

study of genomics can help researchers understand why some people get sick “from certain

infections, environmental factors, and behaviors, while others do not” ("Frequently Asked

Questions About Genetic and Genomic Science"). They hope to discover why “some people who

exercise their whole lives, eat a healthy diet, have regular medical checkups die of a heart attack

at age 40” and others “who smoke, never exercise, eat unhealthy foods live to be 100”
("Frequently Asked Questions About Genetic and Genomic Science"). They specifically want to

identify certain genetic markers that may predispose someone to a certain disease like cancer,

diabetes, or heart disease ("Frequently Asked Questions About Genetic and Genomic Science").

If we can also understand how genes interact with the environment, they can find better ways to

improve health and prevent disease. Until medical advancements improve, however, there is still

some genetic diseases that cannot be cured. Is it in the best interest of the patient to know

whether or not they are predisposed to a certain disease?

On one hand, they could possibly prevent or delay the onset of the disease. For example,

those who carry a genetic predisposition towards type 2 diabetes may be able to help by

modifying their diet or exercise ("Frequently Asked Questions About Genetic and Genomic

Science"). On the other hand, diseases with no known cure, like Alzheimer’s, may or may not be

in the patient’s best interest to learn about their predisposition towards. There is still the chance

that the patient will not develop the disease. In addition, there is nothing they can do about it if

they do develop Alzheimer’s. However, they could prepare themselves or their family more

thoroughly if they were to know in advance that this was a possibility. It is unclear whether

testing for a predisposition is beneficial. It is also unclear who would have access to this

information. If an insurance company were to find out one of their clients was predisposed

towards a disease, could they increase their rate as this person is a greater risk? Or would that

violate privacy laws surrounding that patient’s medical history. Certain diseases may be more

beneficial to test for than others.

Another use of genetic testing that is already heavily used is amniocentesis. According to

the dictionary, this is “used in diagnosing certain genetic defects” by testing some of the fluid

from the amniotic sac in the uterus of the pregnant woman. They can then determine if a child
will have genetic abnormalities like spina bifida, down syndrome, or others. The question is what

will the pregnant mother do with this information? If it is possible to treat or help the baby before

birth, this may be a worthwhile test. However, if the child will still be born and cared for no

matter what, it may not make sense to use genetic tests. There is considerable risk surrounding

doing these tests. The technology could become available to genetically alter the fetus before

birth to reduce the risk or impacts of a genetic disease. In addition, many in vitro embryos could

be tested for genetic disorders and only the healthy ones be used, or the other ones genetically

altered. Before preimplantation genetic diagnosis, physicians can select embryos that are not

predisposed to certain genetic conditions (Ly). Would this use of genetic engineering be

considered ethical? Many people find that using genetic engineering to reduce health risks of a

child to be an acceptable practice and align this with the goals of the Human Genome Project –

helping human health.

While many people are on board with the idea of preventing or treating diseases and

disorders more readily, they are some other, more controversial outcomes of the Human Genome

Project. One of the most interesting possibilities that has arisen due to the Human Genome

Project is the “designer baby” (Ly). This term indicates the genetic engineering of an embryo to

exhibit particular traits that the parents deem appropriate (Ly). A designer baby would be

engineered in vitro for specially selected traits such as gender. In fact, that is already a reality as

many people have used the process of genetic engineering to choose their desired gender. One

example is Monique and Scott Collins who chose to have a girl in 1996 after having two boys as

they wanted “a more balanced family” (Ly). The process is relatively simple in terms of genetics

as gender only relies on one chromosome. There are some other, more difficult traits that could

be the next choice of those wishing to “design their baby.” Things like athleticism, height, or eye
color could become a choice parents make through genetically engineering an embryo and then

having it implanted in the uterus. This is definitely a step farther down the slippery slope of

human genetic engineering than disease prevention measures.

Ethically most would say that choosing to avoid health risks for your baby is not

necessarily wrong or bad. In fact, you could argue that this would give your child a better life.

But should giving someone a better life be the only requirement for genetically engineering an

embryo? The argument could be made that genetically engineering someone to be more athletic

would give them a better life. They would be picked in elementary school for sports, make lots

of friends, have higher self-esteem, and could even go on to make a lot of money playing sports.

Some bioethicists argue that “parents have a right to prenatal autonomy, which grants them the

right to decide the fate of their children” (Ly). For example, a parent can choose to give their

child music lessons which will invariably make them better at music than if they had not been

given lessons (Ly).

However, others argue that this goes too far and allows for any factor of your child to be

chosen for them including whether the child lives at all, in other words, abortion. Regardless of

religious orientation, being able to genetically engineer the “perfect person” is a scary thought to

many. Many say that while harmful characteristics such as genetic mutations can or should be

eliminated, other benevolent traits should not be chosen. In 1994, the Council of Ethical and

Judicial Affairs ruled that selection to prevent or cure disease was allowed, but selection based

on benign characteristics was not ethical (Ly). One reason they cited was the division that would

occur between those who could afford to “design their baby” and those who could not. Economic

divisions would grow into genetic divisions (Ly). This ruling was made in 1994, over 20 years
ago. Our society and cultural values may have shifted. Designer babies could very well become

commonplace in our lifetimes.

With the numerous technological and medical advancements happening every day, where

do we draw the line? What are the boundaries of human genetic engineering? The Human

Genome Project was just the beginning of scientific advancement surrounding human genetic

engineering. With the sequence of our genome mapped and identified, scientists could use that

information for a variety of other outcomes. Some things that have been born out of the

completion of the HGP are genetic testing for medication purposes, predisposition testing, and

designer babies. Each scientific advancement must be ethically considered, and these are no

different. People must consider how they will respond to the opportunities beginning to become

available from human genetic engineering and decide how much is enough?
 Works Cited
""An Overview of the Divsion of Intramural Research"." 9 May 2014. National Human Genome
Research Insititute. 16 October 2018.
""An Overview of the Human Genome Project"." 11 May 2016. National Human Genome
Research Institute. 17 October 2018. <https://www.genome.gov/12011238/an-overview-
of-the-human-genome-project/>.
""Frequently Asked Questions About Genetic and Genomic Science"." 7 September 2018.
National Human Genome Research Institute. 4 November 2018.
Bosch, Dr. Dan Vanden. Ethics of Genetic Testing Rylie Brown. 16 October 2018.
Consortium, International Human Genome Sequencing. "Finishing the euchromatic sequence of
the human genome." Nature International Journal of Science 21 October 2004: 931-945.
Ly, Sarah. ""Ethics of Designer Babies"." 31 March 2011. The Embryo Project Encyclopedia. 4
November 2018.
Paulson, Steve. Salon. 7 August 2006. 6 December 2018.