Kevin K. Chin "The Risks, Costs, and Ethics of the Pursuit of Genetic Therapy in the Healing and Enhancement of the Human Body" Houston Christian High School Distinguished Scholars Program 2013

1. Running
Head:
GENE
THERAPY
The Risks, Costs, and Ethics of the Pursuit of Genetic Therapy in the Healing and Enhancement
of the Human Body
Kevin K. Chin
Houston Christian High School Distinguished Scholars Program

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Table of Contents
Page
Title Page…………………………………………………………………………………………. 1
Abstract…………………………………………………………………………………………... 2
Introduction………………………………………………………………………………………. 3
Review of Related Literature…………………………………………………………………….. 4
History…………………………………………………………………………………… 4
The Risks of Gene Therapy……………………………………………………………… 6
The Costs of Gene Therapy……………………………………………………………… 9
The Ethics of Gene Therapy…………………………………………………………….. 14
Conclusion……………………………………………………………………………..... 16
Method……………………………………………………………………………………….......17
Purpose………………………………………………………………………………….. 17
Participants & Sampling Procedure…………………………………………………….. 18
Research Design………………………………………………………………………….19
Experimental Manipulation/Interventions/Instrumentation……………………………...19
Data Analysis Plan……………………………………………………………………….20
Ethical Consideration…………………………………………………………………….21
Bias……………………………………………………………………………………….21
Assumptions……………………………………………………………………………...21
Limitations……………………………………………………………………………….22
Findings…………………………………………………………………………………………. 22
Sample……………………………………………………………………………………22

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Survey Findings…………………………………………………………………………. 24
Analysis…………………………………………………………………………………. 27
Discussion………………………………………………………………………………………. 28
Conclusion……………………………………………………………………………………… 32
Remaining Questions…………………………………………………………………………… 33
Nutritional Supplements………………………………………………………………… 34
Genetic Pedigrees………………………………………………………………………...35
Biblical Connection………………………………………………………………………………37
References………………………………………………………………………………………. 39
Appendix…………………………………………………………………………………………42

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Abstract
The researcher examined gene therapy and its risks, costs, and ethics. While this review of
related literature focuses on what relevant scholarly sources have to say about the downsides of
genetic therapy, the researcher does not ignore gene therapy’s proclivity toward success in the
future. After researching the three aspects of gene therapy, the researcher conducted new
research centering on the majority’s opinion toward cost and ethics, overlooking risk because of
its natural decline with further research. Thus, two null hypotheses were composed: the first
involved cost and the second, ethics (where gene therapy was divided into its two components).
The researcher gathered data through a 10-question survey sent to a convenient sample
population and ultimately concluded (1) gene therapy was not cost-effective, (2) gene healing
was ethical, and (3) gene enhancement was not ethical. Researching gene therapy directed the
researcher’s attention towards the pursuit of perfection through nutritional supplements and
genetic pedigrees and how these two industries have impacted the United States economically
and socially. The nutritional supplement industry has positioned itself for success in the United
States’ economy, reaching sales up to $11.5 billion as of 2012 and providing 450,000 jobs.
Genetic pedigrees have been on the rise as doctors and patients now acknowledge the benefits of
having them as “screening tools” for potential diseases. By looking into these two industries, the
researcher communicates the idea gene therapy can also influence the world positively.

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The Risks, Costs, and Ethics of the Pursuit of Genetic Therapy in the Healing and Enhancement
of the Human Body
As the human race continues to suffer from the endless appearances of new mutated
genes, scientists have turned their focus on a new and promising “cure”: gene therapy (“Anti-
cancer…,” 2009; Cotrim & Baum, 2008). Nowadays, scientists know that a missing or an extra
gene can cause diseases, also known as mutations (Cotrim & Baum, 2008; “...Genetic
Medicine,” 2009). Destroying the function of a gene, the mutation will produce defective
results, which includes malfunctioned proteins and uncontrolled growth (Cotrim & Baum, 2008;
“...Genetic Medicine,” 2009). On the other hand, gene therapy replaces and corrects mutated
genes, achieved through the “insertion of a functioning gene into cells to correct a cellular
dysfunction or to provide a new cellular function” (Cotrim & Baum, 2008). Moreover, the idea
of gene therapy has actually existed for over a century, but after the recent breakthrough in
recombinant DNA technology gene therapy has became a reality (Cotrim & Baum, 2008). As a
result, gene therapy carries the potential to be the key to permanent victory over the lifelong
battles with the malicious diseases that have plagued the human race for centuries. While current
medicines––surgery, drugs, chemotherapy, and other methods––are temporary or ineffective
solutions in the fight against present diseases, scientists bring the battle to the level of genetics.
As a result, the treatments become more effective but also more dangerous. The researcher
considers the dangers of gene therapy by asking, is gene therapy a worthy pursuit when the
researcher considers the risks, the costs, and the ethics of gene therapy?

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History
The studying of genetics officially began in the 1800s with the Austrian monk Gregor
Mendel, theorizing that a relationship between genes and traits existed (“...Genetic Medicine,”
2009). As he conducted his own research in a monastery garden, Mendel observed how traits are
passed from one generation to the next (“...Genetic Medicine,” 2009). Mendel, dying in 1884, set
the foundation for the study of genetics (“...Genetic Medicine,” 2009). In 1906, zoologist
William Bateson coined the term––genetics, which is the study of heredity (Wynbrandt &
Ludman). Nevertheless, even before Gregor Mendel, many early individuals had observed
genetics. The Egyptians, the Babylonians, the Chaldeans, and the Ashkenazi Jews noticed
similarities between blood-related individuals and unique differences between unrelated
individuals (Wynbrandt & Ludman). The Ashkenazi Jews understood and acknowledged that
the third child would also have hemophilia after the first two infants died of the same disease
(Wynbrandt & Ludman). Ultimately, the Jews successfully connected the defects in genetics to
diseases.
Nonetheless, modern genetics officially began with James Watson and Francis Crick’s
discovery of the structure of deoxyribonucleic acid, or DNA, in 1953 (Editors of Salem Press,
2008; “...Genetic Medicine,” 2009). Since then, scientists have sought a way to correct genetic
defects in a cell, ushering in the idea of gene therapy (Editors of Salem Press, 2008). By the
early 1970s, scientists could isolate and experiment on specific strands of DNA by the use of
“restriction enzymes,” which cut DNA molecules at specific points (Wynbrandt & Ludman). In
doing so, the isolation of the strands assisted the search for specific genes (Wynbrandt &
Ludman). Scientists then identified the specific functions of certain genes and marked the
location of the genes on the chromosomes (Wynbrandt & Ludman). In the 1980s, scientists

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replaced defective enzymes in the metabolic pathways (Editors of Salem Press, 2008). One
successful experiment includes treating babies (but can be found in adults as well) with
Adenosine deaminase (ADA) deficiency–a disease where an enzyme no longer converts the
toxins into uric acid causing immunodeficiency (Editors of Salem Press, 2008). Stem cells were
removed from the umbilical cord of a child with ADA deficiency, and correct genes are inserted
into the collected stem cells; finally, the altered cells are inserted back into babies (Editors of
Salem Press, 2008). After many years of examining the babies, the scientists established gene
therapy as a cure for ADA deficiency (Editors of Salem Press, 2008). Nowadays, scientists are
trying to use gene therapy in the fight against multiple diseases, such as cancer,
neurodegenerative diseases, and hemophilia.
Though gene therapy holds much promise, it still has its own setbacks. Insertion, which is
the process of “inserting” the new gene, uses two types of vectors: viral, also known as
transduction, and nonviral vectors, also known as transfection (“Anti-cancer...,” 2009; Cotrim &
Baum, 2008). Though viral has a better success rate of introducing the correct genes into the
patient’s DNA, viral vectors pose many safety concerns like the possibility of prompting an
immune response; on the other hand, nonviral vectors are inefficient (“Anti-cancer...,” 2009;
Cotrim & Baum, 2008). Gene therapy has been a slow process filled with its own tragedies, such
as the death of eighteen-year-old Jesse Gelsinger in September 1999 (Cotrim & Baum, 2008).
Another specific problem with gene therapy deals with cancer, a disease that has been observed
in the human race for at least a hundred years (Cross & Burmester, 2006). Similar to other gene
therapy processes, cancer treatment, using gene therapy, includes the introduction of engineered
cells–a recombination of dead cancer cells and cytokine genes or antigenic protein genes–to the
patients, allowing their immune systems to recognize cancer cells (“Anti-cancer...,” 2009; Cross

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& Burmester, 2006). With gene therapy, the fight against cancer seems to be a clear victory;
however, initial trials “have produced mixed results”—condition improved, condition worsened,
or no effect—showing how gene therapy still needs time to develop (Cross & Burmester, 2006).
Like many other medical practices, the purpose of gene therapy is to return the human
body to the state of “perfection.” In fact, gene therapy has the potential to enhance human traits
or qualities by adding or correcting genes. Therefore, this ability brings many people to wonder
whether or not gene therapy is actually ethical (Cotrim & Baum, 2008). While gene therapy is
only in its early stages, it has already encountered major disappointments. In the end, this
researcher must consider risks, costs, and ethics in order to present a sufficient argument for or
against gene therapy.
The Risks of Gene Therapy
Rate of Failure
From the beginning, scientists recognized that bringing the battle against diseases to the
level of genetics required an enormous amount of caution. Since inserting genes carries the
possibility of activating other genes that could cause diseases, scientists constantly worry about
the possibility of inserting a gene in or near healthy genes (Cohen, 2003; Coghlan, 2010). In
other words, gene disruption became a major concern among gene therapists. Four French boys
fell victim to this when they were treated for immune deficiency and developed leukemia
(Coghlan, 2010). As a result, one of the boys died. From this experiment, Mark Kay of Stanford
University stated, “[Gene disruption] raises the bar of risk somewhat. But how much higher it is
raised is still unclear” (Cohen, 2003).
Mark Kay continues to research on mice with a new vector, adeno-associated viruses–
another popular vector among gene therapists (Cohen, 2003). Unfortunately, his conclusions

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were quite discouraging to the gene therapy activists. Injected in mice livers, the adeno-
associated viruses integrated themselves near active genes, which are working genes (Cohen,
2003). In fact, out of 29 insertions, 72% appeared in the genes (whether healthy or mutated)
rather than junk, non-functioning DNA (Cohen, 2003). Furthermore, 20 of the genes were active
genes, or healthy genes (Cohen, 2003). In the end, Kay was forced to conclude that active genes
are “natural hot spots” for inserted genes, and therefore, gene therapy may hold higher risks than
thought (Cohen, 2003). If the inserted genes do disrupt active genes, then gene therapy may do
more harm than good.
The harm can be clearly seen in the deaths of patients. Jesse Gelsinger, who died in
1999, was not the only victim of gene therapy (Skelly, 2007). Treated in a rheumatoid arthritis
trial, a 36-year-old Jolee Mohr also fell victim of gene therapy’s tendency to fail (Skelly, 2007).
On October 2005, Moher and 126 other subjects received an initial dose of a placebo (a pill), and
then 74 of them received a second dose of another drug called tgAAC94 (Skelly, 2007). On the
second dosage, Mohr died in the University of Chicago Medical Center (Skelly, 2007). As a
result, U.S. Food and Drug Administration put gene therapy on hold to research the dangers of
adeno-associated viruses (Skelly, 2007). In essence, scientists such as Mark Kay can conclude
that adeno-associated viruses are the cause of Jolee Mohr’s death, developing histoplasmosis––
fungus infection––by suppressing the tumour necrosis factor alpha receptor (Skelly, 2007). Yet,
doctors and researchers continue to support the use of adeno-associated viruses, focusing on the
great potential gene therapy carries. For instance, Dr. Chris Evans is one of many who plan to
conduct his own research with adeno-associated viruses (Skelly, 2007). While Jesse Gelsinger
most likely died from an immune reaction to the adenovirus, Jolee Mohr most likely died from

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developing a fungus infection (Skelly, 2007). As a result, gene therapy was put on hold for a
short time.
Despite the risks that come with adenovirus vectors, scientists continue to be proponents
for gene therapy (Wenner, 2008). Instead of contemplating the potential dangers of gene therapy,
scientists optimistically and persistently explore and experiment to understand the “full
dimension of what [gene therapy] can do” (Wenner, 2008). In the United States, gene therapy
still has not obtained approval from the Food and Drug Administration; nevertheless, it has 800
trials ongoing (Wenner, 2008). So far, the efforts in curing diseases seem to be paying off.
Scientists have just begun to realize the potential benefits of gene therapy through countless
breakthroughs in curing cystic fibrosis, restoring sight to the blind, attacking cancer cells, and
repairing the heart (Wenner, 2008).
Delivery Issues
Despite these breakthroughs, scientists have also begun to acknowledge the greatest
barrier in gene therapy–the delivery (Wenner, 2008). Unlike other medicinal processes that have
only a small amount of the pill or the injection successfully reaching the target, gene therapy
targets only the desired tissues (Wenner, 2008). Thus, after the recombinant gene is inserted into
the body, the whole gene must be delivered to the right location to be able to target the correct
tissues (Wenner, 2008). To make things more complicated, the desired locations may be totally
inaccessible targets (Wenner, 2008). Therefore, the delivery to the right location is the first
major problem in gene therapy. Secondly, the therapeutic contents are stored within modified
viruses–the vectors of gene therapy–that may cause the immune system to react, to fight, and
ultimately, to reject the delivery (Wenner, 2008). Scientists counter the immune system’s efforts
by using lower therapeutic doses or by pretreating patients with immunosuppressive drugs or by

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essentially hiding the vectors (Wenner, 2008). Other scientists have tried to use vectors with
“naked” DNA, unrecognizable to the immune system (Wenner, 2008). Even though gene therapy
contains these two difficult hurdles, scientists continue to remain optimistic and focused on the
overwhelming potential of gene therapy, searching for answers to overcome these hurdles once
and for all.
In the end, scientists have entered the world of genetics with caution. Many have come to
realize the many problems preventing gene therapy from being successful. Among these
problems are gene disruption, which can lead to fatal consequences; the delivery to the correct
location; and the immune system’s rejection of vectors carrying the therapeutic genes.
Furthermore, the deaths of patients have also tainted and slowed the process. Still, scientists
remain optimistic, stubbornly searching the unknown of possibilities that come with gene
therapy.
The Costs of Gene Therapy
Actual Treatments
After presenting the possibilities and the problems of gene therapy, a common
controversy resides in the major issue of price: is gene therapy too expensive for the common
man? Though limited amount of quantitative information can be found on the Internet, this
researcher presented today’s prices to the best of his abilities, the benefits of gene therapy, and
the idea of intellectual property. After acknowledging the price and other related information,
this researcher reached the conclusion that gene therapy would, in fact, be improbable to attain
for a common patient in today’s society.
The Glybera treatment treats for lipoprotein lipase deficiency (LPLD)–the inability to
break down fat (Staff Writer, 2012; Whalen, 2012). As a result, abominable pain and pancreatic

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inflammation might occur (Staff Writer, 2012; Whalen, 2012). To evade these agonies, a virus
with a functioning copy of the gene for breaking down fats infects the individual’s muscles (Staff
Writer, 2012; Whalen, 2012). This process costs $1.6 million per patient; thus, this therapy is
cost-prohibitive to anyone except the wealthy (Staff Writer, 2012; Whalen, 2012). More
importantly, this treatment became the first gene therapy drug that the European Union has
approved–a huge milestone in medicine (Whalen, 2012). This accomplishment did not happen
without setbacks, including three rejections from the European Medicines Agency (Whalen,
2012). Dutch Company UniQuire, a major contributor to the development of this drug, claims
that this one-time injection of the drug is worth the $1.6 million because of the small market: one
or two people per each million suffer from LPDP (Whalen, 2012). Furthermore, national
insurers in Europe are likely to pay the bill (Whalen, 2012). With that said, the price is still
being criticized by many, just like the prices for drugs of other rare diseases. In the end, this
price may still be out of reach for those with LPDP (Whalen, 2012). Despite the arguments with
the price, UniQuire plans to obtain approval in the United States, where no gene therapies have
been approved for the market, in 2013 (Whalen, 2012). Glybera marks only the beginning of the
era of expensive gene therapy drugs.
Another example is gene therapy for a rare, genetic brain disorder that causes severe
astrophy (Lopatto, 2012). While a normal baby born with a brain disease would have severe
deterioration and death within about three years, studies have shown that gene therapy holds the
ability to increase each baby’s life from seven to 10 years (Lopatto, 2012). Approved in 2001,
this study would transport the adenovirus with the healthy genes through a hole drilled inside the
skull (Lopatto, 2012). The results showed that this therapy was more successful in younger
patients than in older patients (Lopatto, 2012). With an improved alertness, the younger patients

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still retained “cognitive abnormities,” like the inability to talk at all (Lopatto, 2012). An older
patient improved from a vegetative state to a responsive state with blinking as “yes” and opening
her mouth as “no” (Lopatto, 2012). In the end, 11 out of the 13 patients had a decrease number of
seizures; the other two patients have had none before and after the procedure (Lopatto, 2012).
As a result, the treatment does extend life and restores some functions in the brain, but the
procedure costs $100,000 just for the first two years.
Why do such treatments cost so much? This question touches the beneficial aspects of
genetic therapy. Since gene therapy is commonly thought to be permanent, the cost could be
justified (Staff Writer, 2012). In a sense, gene therapy has the ability to cure all kinds of cancer,
autism, and other diseases, ultimately prolonging life in the future (“Do the benefits
outweigh…,” 2013). This capability poses many questions concerning when and how death
would occur and the concept of the “survival of the richest.” Additionally, gene therapy aims to
correct patients’ childhood deformities, which eventually leads to the beautification of any
person with enough money to pay for a specific desired trait (“Do the benefits outweigh…,”
2013). The issue of price remains a personal opinion that can be swayed depending on an
individual’s income and opinions on the pursuit of longer life and beauty.
Intellectual Property
Another issue concerns intellectual property. As of right now, only the major powers of
the world––the economically successful––hold the ability to research gene therapy, while the
poor countries have the facilities and the expertise but not the money (Bouguerra, 2005). For
example, India owns six laboratories but remains dependent on rich countries for the funding
(Bouguerra, 2005). In essence, the major powers fund the poorer countries if they are willing to
research according to the major powers’ agenda. Therefore, Indian scientists are forced to

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identify human genes instead of organisms that will benefit their own population–microbes,
mosquitoes, contaminants, and other organisms (Bouguerra, 2005). By researching their desired
organisms, they can develop applications for the poorer societies, while DNA research with
humans would not necessarily lead to medical treatments for the poor (Bouguerra, 2005). In
essence, the rich can dictate what is being researched and continually obtain intellectual property
from the poor’s cheap labor. This dilemma leads the researcher to ask an important question:
would gene therapy be available or even beneficial to the poor population in rich nations? “No”
would probably be the answer because gene therapy is unaffordable and unavailable to the poor
(Bouguerra, 2005; Gert, 2001). In a way, the priority lies in caring for the rich rather than the
poor.
Genetic Modified Foods
Since gene therapy is basically the genetic engineering of humans, this researcher can
study the history of genetically modified foods to predict the future of gene therapy. In fact, the
two processes share similar characteristics, allowing this researcher to conclude many of the
problems with gene therapy were problems for genetically modified food. In genetically altering
a plant, desired genes are also inserted into the plant’s chromosomes (Teresko, 1997). In fact,
one purpose of genetically altering a plant’s genes is to give the plant the ability to produce its
own insecticides (Strom, 2013). This purpose can parallel with gene therapy’s potential of
fighting malicious cancer cells; however, people remain in a heated debate on the ethics of gene
therapy. On the other hand, genetically modified organisms (GMOs) have crept into our society
in massive amounts without public awareness (Black, 2012; Strom, 2013). The truth is 80% of
processed foods in the grocery stores are GMOs (Black, 2012). In conclusion, the widespread
use of implementing GMOs foreshadows the widespread use of gene therapy in the future.

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Furthermore, this researcher can compare in terms of price. In an article from alive.com,
the author reveals how even the farmers of GMOs are not earning a profit (Abergel). Engineered
corn has cost farmers $659 million, while the profits only amounted to $567 million (Abergel).
Thus, the farmers are actually losing money. Where is the extra money going? Biotech
companies. These research companies continue to earn a substantial amount, which means the
farmers and consumers are still a big portion of the expenses for GMOs (Abergel). In
comparison to gene therapy, this researcher can suspect gene therapy would continue to be an
expensive market, while the genetic research companies receive the most benefits from gene
therapy’s success.
When put into perspective, genetic therapy treatment demands a substantial amount of
money from patients. Consequently, only the wealthy class of Americans would have the
resources to spend in order to reap the benefits of gene therapy. Furthermore, with the issue of
intellectual property, the researcher can see how rich communities fund current research and
development; therefore, the benefits are aimed toward only the rich communities. Even when
changing a physical trait or curing a disease becomes necessary, would the lower class be able to
afford it? The answer is probably not. Also, while GMOs in foods were unwelcomed at first,
they are now common and consumed by many people across the globe. On the other hand, the
price remains an issue for both GMOs and gene therapy, but the consumers still purchase GMOs
despite the cost. This comparison only suggests gene therapy, despite its potential dangers and
unethical possibilities, would gradually be accepted in the future.

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The Ethics of Gene Therapy
Exploitation of Wealth
While gene therapy’s main purpose is to cure the world of malicious mutations, gene
therapy’s potential goes far beyond. In today’s world, wealthy individuals tend to pursue vain
medical treatments, such as plastic surgeries. This aspect brings a graver danger in gene therapy–
the possibility to insert any desired genes in order to add or to correct any characteristics of any
human being (Anderson, 1999). Humans would be able to abuse the potential of gene therapy to
the point where “eugenics could be practiced on a scale far larger than any ‘selective breeding’
policy could accomplish” (Anderson, 1999). In other words, humans (who can afford the
treatment) would all become “perfect” in a matter of a few procedures. Wealthy individuals
would always have the irresistible temptation to reach the shifting standards of beauty in society
(Anderson, 1999).
These wealthy individuals will be the future targets for gene therapy. In 10 more years,
global life science companies will hold patents on about 30,000 genes (Rifkin, 2006). Even
today, genes are the “raw resource[s] of the new economic epoch” for a variety of businesses
dealing with agriculture, animal husbandry, and pharmaceuticals (Rifkin, 2006). With the
installment of gene therapy, human medicine will intensify the commercial use of genes. A
market driven by eugenics––the science of improving a human population––would become
enormously plausible (Rifkin, 2006). Even today, indications of potential abuse are appearing
(Anderson, 1999). For example, one company intended to develop a treatment for hair loss for
those who suffer from chemotherapy (Anderson, 1999). Finding a gene that could stimulate hair
growth to prevent traumatic effects of chemotherapy’s hair loss seems to be a genuine motive;
however, after some investigation, the real motivation lies in the ability to market this gene to

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naturally bald men (Anderson, 1999). Is this a bad alternative motive? Not really, but where is
the line dividing unethical from ethical? Instead of gene therapy, the abuse can lead to genetic
enhancement (Gert, 2001). Therefore, it is essential to remain cautious as scientists continue to
make breakthroughs in gene therapy.
Gene Enhancement
Another problem to foresee is the parents’ ability to genetically alter their babies before
birth to obtain traits for strength, intelligence, resistance to toxins, and many more (Gert, 2001).
Conversely, scientists do realize the potential danger of genetic enhancement. By enhancing one
generation’s genetics, the effects do not last only one generation; the enhanced genes would be
passed on to future generations, and thus making the effects endure for many generations to
come (Gert, 2001). Therefore, a slight mistake in gene enhancement will be detrimental to the
future society (Gert, 2001).
Since gene enhancement would be an expensive luxury, another concern stems from gene
therapy playing a role in inequality and abuse (Gert, 2001). Wealthy families would be able to
purchase their “social and political dominance” over others (Gert, 2001). Throughout history,
certain traits would give an individual a certain edge in life. For example, if gene therapy existed
in the age of Hitler, the persecuted Jewish population might consider giving themselves blue
eyes and blonde hair. Then, they could avoid persecution and could enter the ranks of the Aryan
population. Now, the question is whether or not the individuals will take the risk in bankruptcy
or other sacrifices to obtain gene enhancement–the gateway to a better life. The consequences of
such a future would be incomprehensibly harmful. The possibilities do not stop there. Gene
enhancement can engineer humans for special “niches” in societies (Gert, 2001). For example,
super soldiers, like Captain America, from science fiction could become a reality. How about

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engineering poison resistant immune systems, see-in-the-dark eyes, perfect bodies suited for
runners? The possibilities are limitless; the consequences are unfathomable. Nonetheless,
scientists might not to have these risks in mind as they compete to be the first to discover the
new possibilities of gene therapy (Gert, 2001).
With gene therapy, gene enhancement becomes the next step. While many gene therapy
scientists and advocates ensure the public that genetic engineering would be limited to genetic
repair, the temptation to improve oneself is too much to bear for certain individuals (Gert, 2001).
In other words, if scientists continue their pursuits in gene therapy, genetic enhancement is
inevitable. Some scientists believe the only way to postpone the inevitable is to maintain focus
of “repairing” genes rather than “replacing” genes (Gert, 2001). Yet, what if a “damaged” gene
was being short instead of being tall? In a world with gene therapy, humans can allow their
imaginations to go wild, picturing a future where 73-year-olds and 82-year-olds would still be
considered youths (Anderson, 1999). While researchers have this picture in their minds, they
might as well also have the picture of extreme inequality and segregation and mistreatment of the
lower class. The future is literally in the hands of humans (mainly the rich). Whatever
experiment conducted in gene therapy would then be a step closer to gene enhancement. In
today’s society, there remains a crucial and fundamental question: Will man in the present and
the future remain genetically responsible? Hopefully, the answer is a resounding “yes.”
Conclusion
Modern genetics began in 1953 with the discovery of the double helix. From that stage,
scientists have identified genes, part of the Human Genome Project. Presently, genes have
become the focus for a cure for many diseases through a process known as gene therapy. In
layman’s terms, gene therapy is the insertion or altering of genes in humans. Gene therapy holds

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many possibilities, including curing practically any disease or mutation and changing human
traits. Nevertheless, gene therapy is still in its trial stage and remains expensive. Furthermore, the
chance for failure remains a high concern among researchers. Mainly, the problem lies in the
delivery of the gene. Would it be accepted? Would it end up in active or junk DNA? After
perfecting the tendency to fail, the next obstacle becomes price. Today, a gene therapy treatment
like Gybera costs around a million dollars. This observation brings the question “who would be
gene therapy’s main consumers?” The rich. In essence, gene therapy would only contribute to the
“survival of the richest.” The upper class would be able to cure their diseases and change their
appearances, which brings to question whether or not pursuing a long life (to the point of
immortality) and beauty (in terms of perfection) is ethical. In the end, if researchers continue to
pursue after gene therapy, man would be able to control many aspects of God’s creation. God,
however, warns us not to be obsessed with our physical appearances but rather our true spiritual
condition. Most likely, the beautification of our physical appearance will not glorify God, but
prolonging our life can lengthen our time to serve the Lord on this earth. Nevertheless, in all
things, man must submit his will under God’s supreme authority. Therefore, if gene therapy
becomes a major part of the future, man must be ready to take on the responsibilities that come
with genetic enhancement and genetically extending life.
Method
Purpose
After looking over all the risks, costs, and ethics of genetic therapy, the researcher
decided to focus on the costs and ethics aspects of gene therapy. The reason for the exclusion of
risk as a research focus was because the number of risks in gene therapy would most likely
decrease in the future, as further testing and research would continue to perfect the process of

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inserting genes or correcting genes. Next, this researcher hoped to understand the majority’s
opinions on the current cost of gene therapy treatment (Glybera at a cost of $1.6 million) and the
ethics of gene therapy. As a result, the researcher tested two null hypotheses.
First Null Hypothesis
In the majority’s opinion, gene therapy is cost-effective.
Second Null Hypothesis
In the majority’s opinion, gene therapy is ethical.
In other words, the researcher studied the people’s views on gene therapy’s cost and ethicalness
to see in what circumstances would the majority most likely accept gene therapy today.
Participants & Sampling Procedures
The researcher used a convenience sampling method because of the limited number of
people to whom the researcher could send the survey. As a result, this sampling method results
in many problems when making generalizations. Thus, the researcher included questions on the
population’s age, ethnicity, occupation, personal monthly income, estimated amount spent on
medical treatments, and religion to better understand the population tested. These questions
allowed the researcher to qualify the generalizations and conclusions made while presenting the
data collected.
With that said, the ideal sample population would consist of a diverse expanse of ages,
ethnicities, occupations, and religions, mirroring a sample population from a random sampling
method. The main two characteristics that the researcher hoped to obtain a wide variety of
would be occupation and religions. Occupation diversity would guarantee a sample population
with different personal incomes; thus, when the survey participants answer the question over
price, the results to that question would not be biased. Similarly, since religious backgrounds

21. GENE THERAPY 21
often contribute to a person’s morality, religious diversity would guarantee a sample population
with different ethical views. Therefore, an ideal sample population would be that of different
occupations and diverse views of ethics.
Research Design
Using a survey made through Google Forms, the researcher conducted a descriptive study
through a quantitative research design. In other words, the survey produced data that was
analyzed through a statistical investigation of patterns and trends in the situation of whether gene
therapy is cost-effective and ethical. The advantageous reasons for picking this research design
include the ability to reach a large population and the ease in collecting data. As the world today
is now electronically connected through the services of social media sites and email, the
distribution and also collection of data becomes exponentially easier and faster.
Experiment Manipulation/Interventions/Instrumentation
As said before, the researcher designed the instrument used for collecting data––a survey
or questionnaire––containing mostly multiple-choice questions. The researcher used a survey for
its efficiency in obtaining responses at a rapid rate. Thus, with more responses, better estimates
of the population’s true opinions were made. In terms of the cost-effectiveness null hypothesis,
the researcher included two questions; for the ethics null hypothesis, the researcher included two
questions as well. The first question dealing with cost-effectiveness provided the same
information (the price of Glybera) to all survey participants, hoping to receive their “yes” or “no”
answer of whether or not they would pay for such a treatment. The second question for cost-
effectiveness asks the participants to use the cost of their past medical experiments to produce an
ideal price range for gene therapy. This question does however include a flaw, since the need for
major surgeries for injuries, the rise of severe illnesses like cancer, and other circumstantial

22. GENE THERAPY 22
situations would cause an inflation on the annual amount spent on medical treatments.
Nevertheless, the ability to control such a flaw is improbable. Since gene therapy could be
divided into two parts––healing and enhancement––the questions dealing with ethics offered the
definitions of gene healing and gene enhancement (formed by the researcher from the research
on current literature on gene therapy) to all the participants. As said before, the researcher
expected to use the variety of beliefs held by specific religions and morals developed through
certain cultures to develop conclusions that generalizes the public’s opinion.
Data Collection
This survey or questionnaire was distributed by posting the link to the survey on the
social media site Facebook and through emailing the link to Houston Christian High School’s
parents and faculty along with family and friends of this researcher. Also, this researcher
expected individuals who completed the survey to also share this link. The time this survey was
available to the public began on October 21, 2013, and ended December 3, 2013. No reminders
were given in the process of collecting responses to the survey.
Data Analysis Plan
The researcher conducted analysis on the collected data from the survey through
inferential statistics. Utilizing a one-proportion z-test for each null hypothesis, where p equals
the proportion of the population who believes gene therapy is (1) cost-effective or (2) ethical. If
p was significantly greater than or equal to 50%, then the researcher would not be able to nullify
the null hypothesis tested. If p was significantly less than 50%, then the researcher had compiled
enough evidence against the null hypothesis to validate the alternative hypothesis.

23. GENE THERAPY 23
Ethical Consideration
In order to protect the human subjects, the phrase “taking this survey indicates your
consent for your response to be used in my research” was included in the email and also the
survey sent to the public. Since the population’s views may change in the future and some views
may seem offensive to others, the researcher will not hold the responses against the human
subjects. Furthermore, the responses remained anonymous to prevent emotional or physical
harm to the subject when the conclusion of the data collected is presented.
Bias
Since the link to the survey was distributed through a social media site and multiple
emails, the study design and instrument presented a bias against people without access to
computers. Furthermore, the survey was in English, creating a bias against people who are
illiterate in the English language or even blind. Also, since a majority of the responses came
from an email to Houston Christian High School’s faculty and staff, the data collection process
naturally created biases. Furthermore, access to the link on Facebook was limited to only the
researcher’s “friends.” These “friends” most likely held similar views and were raised in similar
circumstances as the researcher. As a result, the study design was bias towards Christians, the
richer population, and the Caucasian population.
Assumptions
In order to create a substantial generalization of the public’s responses, the researcher
held many assumptions to test the null hypotheses. For example, the researcher assumed that the
participants would be honest in their responses. Furthermore, the assumptions of a typical
population and normal distributions also were made in the process of analyzing the data
collected.

24. GENE THERAPY 24
Limitations
Because of limitations on time, money, and resources, the researcher deliberately did not
study the public’s opinions on the risks of gene therapy as these opinions are subject to change as
the risks are likely to decrease in the future. The continual trials for gene therapy would only
further the perfection of the process. Also, since there are many different gene therapy
treatments––each with their own risks––the amount of information to explain to the general
public would be overly tedious as well. The researcher also avoided the topic of gene therapy’s
cost in the future as that is subject to change as well. If gene therapy treatments came in the size
of pills, then the supply would be greater, creating a lower cost. Thus, in conclusion, there are
simply too many uncertainties regarding the future in general, so these aspects of the problem
remained outside the researcher’s interests. On the other hand, the researcher could have
improved the research design and sampling size by having access to the costs of current trials for
gene therapy and a larger, more diversified population.
Findings
Sample
In total, the researcher obtained 196 responses. In terms of the sample reached in this
researcher’s experiment, the age ranged from 15 to 65, with the understanding that some did not
answer the age question and also the researcher had to discredit one improbable answer of
300,000. For ethnicity, the survey tended to reach mainly Caucasians (72% of the population)
with Asian or Pacific Islanders running in second (12% of the population).

25. GENE THERAPY 25
Occupation ranged from all sorts of fields (shown in Figure 1A), showing the survey’s
success in obtained answers from a population with a widespread of fields. The “other” category
would include “occupations” such as homemakers or students.
Figure 1A
Next, a plurality of the sample earned more than $10,000 a month (46% of the
population) and was predominantly Christian (93% of the population) as shown in Figure 1B.
Figure 1B
Trades
and
Personal
Services
Science,
Math,
&
Technology
Public
&
Social
Services
Media
&
Social
Services
Health
&
Medicine
Other
Arts,
Entertainment,
&
Sports
Business

26. GENE THERAPY 26
The “other” category included a Jehovah Witness and several Catholics. Lastly, the population
spends a wide range for medical treatments, with the majority spending in the range of $1,000 to
$4,999 per year on average in the last three years. Knowing all this background information of
the sample greatly helps the development of an accurate scope to the conclusion.
Survey Findings/Interviews/Observations
After the questions over the sample’s background information, the next two questions on
the survey focused on the first null hypothesis over price. As stated previously, since gene
therapy was only in its trial stages and not many treatments have reached the market, information
on gene therapy’s price was hard to obtain. Nevertheless, a gene therapy treatment known as
Glybera recently reached the European markets at a price of $1.6 million dollars. Thus, the
researcher utilized this information and formed the question, “Would you pay the price of $1.6
million dollars if a close family member had LPLD?” In addition to this question, the researcher
desired to put this price into context by explaining what was LPLD, the reasons for its high price,
and current ways of treating this rare disease (which is basically to eat a low-fat diet).
Figure 2A
As seen in Figure 2A, 89% of the sample replied “no” to this question; therefore, the researcher
could conclude that the majority of the sample would not pay for the LPLD treatment and would
prefer enduring a low-fat diet instead.

27. GENE THERAPY 27
As the majority would not pay for a $1.6 million dollar treatment, the researcher desired
to obtain the public’s ideal price for gene therapy by having the participants answer the
following question “What would be your ideal price range for genetic therapy treatments?” after
comparing with the cost of past medical procedures. The responses to this question varied from
all ranges set by the researcher, which can be seen in Figure 2B.
Figure 2B
Most importantly, the researcher noticed the price range from $1,000 to $9,999 held 37% of the
vote, more than any other price range.
The last two questions revolved around the second null hypothesis over ethics. In
summary, gene therapy treatments can be divided into two classifications: healing and
enhancement. Consequently, in order to determine gene therapy’s ethicalness, the researcher
decided to acquire the survey participants’ opinions on whether each classification was ethical or
unethical. As a result, this inquiry produced the two questions (1) “Is genetically healing
ethical?” and (2) “Is gene enhancement ethical?” With these questions, the researcher also
provided definitions. Gene healing was “the changing or replacing of a faulty gene to heal a
disease,” while gene enhancement was “the adding or changing traits to the human body.”

28. GENE THERAPY 28
Figure 2C
According to the results found in Figures 2C, an overwhelming 91% of the sample believed gene
healing was, in fact, ethical.
Figure 2D
According to the results found in Figures 2D, 35% of the sample believed gene enhancement was
ethical. So, as long as gene therapy never crosses the line from healing to enhancement, the
majority of the sample would support gene therapy and its many benefits.

29. GENE THERAPY 29
Analysis
In order to statistically analyze the responses from the survey, the researcher performed a
one-proportion z-test. If the p-value obtained was less than .05, the researcher would reject the
null hypothesis.
For the first null hypothesis––gene therapy is cost-effective––the researcher used only the
data collected from the first question over LPLD. While the price of gene therapy treatments
would inevitably fluctuate depending on different diseases, the researcher concluded his findings
over price with Glybera’s price as the experiment’s baseline. After performing the one-
proportion z-test, the p-value obtained was zero, which means that the proportion of the sample
population that believed gene therapy was cost-effective was significantly less than 50%. As a
result, the researcher must reject the null hypothesis and uphold the alternative hypothesis that
gene therapy is not cost-effective when taking into account a currently available gene therapy
treatment’s price.
For the second null hypothesis––gene therapy is ethical––the researcher performed two
one-proportion z-tests to determine if (1) gene healing and if (2) gene enhancement were ethical.
The p-value in the first experiment was one; the p-value in the second experiment, 9.82 x 10-6
.
The first p-value was greater than .05, causing the researcher to retain the null. The second p-
value was less than .05, causing the researcher to reject the null. In other words, the proportion
of the sample that believed gene healing was ethical was significantly greater than 50%, while
the proportion of the sample that believed gene enhancement was ethical was significantly less
than 50%. As a result, in the majority’s opinion, gene healing is ethical while gene enhancement
is not ethical.

30. GENE THERAPY 30
In summary, the first null hypothesis was rejected, leading the researcher to accept the
alternative hypothesis that, in the majority’s opinion, gene therapy is not cost-effective. Next, the
second null hypothesis was divided into two parts: gene healing and gene enhancement. Gene
healing was considered ethical in the majority’s opinion; gene enhancement, unethical in the
majority’s opinion. The researcher then upholds the first null hypothesis for gene healing while
rejects the null hypothesis for gene enhancement, leaving gene healing is ethical but gene
enhancement is not ethical.
Discussion
These findings from the researcher’s survey contributed to the discussion found in the
review of related literature. Again, gene therapy involves the “insertion of a functioning gene
into cells to correct a cellular dysfunction or to provide a new cellular function” (Cotrim &
Baum, 2008). Though gene therapy seems to hold enormous potential, the researcher wished to
discover aspects that may possibly hinder gene therapy from being a worthy pursuit. In
summary, the three final aspects were gene therapy’s risks, the costs, and the ethics. Like
previously stated, the risks would most likely decrease as scientists continue to perfect the gene
therapy procedures. In fact, a simple search on the worldwide web would produce countless
more successes than the year before; in other words, the amount of risks involved in gene
therapy would reduce with time and more research. As a result, the researcher deliberately
focused on finding the majority’s opinion on the last two aspects: cost and ethics.
Findings on Cost
In the review of related literature, the researcher concluded that gene therapy treatments
would be improbable to attain for a common patient in today’s society. Since Glybera was the
first gene therapy treatment on the market, official prices of other gene therapy treatments cannot

31. GENE THERAPY 31
be found. Consequently, the researcher decided to find out whether his sample would pay for
Glybera and then what would be the sample’s ideal price of gene therapy.
Previously, the final decision on Glybera’s price of $1.6 million dollars was that it was
cost prohibitive to anyone except the wealthy. Nevertheless, the researcher’s findings furthered
this statement. With a plurality of the sample earning more than $10,000 a month, the findings
concluded that the majority (89%) would not pay for a $1.6 million dollar treatment. In other
words, even the wealthy individuals would have issues with paying for such an expensive
treatment. As the only alternative to treating this rare disease was to take on a low-fat diet, most
people would prefer this alternative rather than paying the price of Glybera. With that said, the
researcher’s sample follows the trend to criticize the prices of other rare diseases. Originally,
since gene therapy is commonly thought to be permanent (which can be true or untrue depending
on the treatment), the cost could be justified; but according to these findings, this price may still
be out of reach for those with LPDP, wealthy or not (Staff Writer, 2012; Whalen, 2012).
Next, the results of the Glybera question generate another question on what would then
be the majority’s ideal price. The findings produced $1,000 to $9,999 as the leading price range,
with 37% of the vote. Keep in mind, $1,000 to $9,999 is significantly lower than Glybera’s $1.6
million and also the brain atrophy treatment’s $100,000 for the first two years (Lopatto, 2012;
Staff Writer, 2012; Whalen, 2012). As a result, the current prices available for market and trial
gene therapy treatments do not fit the majority’s ideal price range.
Also, in the review of related literature, the researcher discussed intellectual property and
genetically modified organisms (GMOs). Both ideas tie into the findings found in the
researcher’s study. With intellectual property, the researcher found that scientific research
priority lies in caring for the rich rather than the poor. Like previously said, the rich should be

32. GENE THERAPY 32
able to dictate what is being researched and continually obtain intellectual property from the
poor’s cheap labor. Nevertheless, if even the wealthy desires a lower cost for gene therapy
treatments, would not the price decrease? With GMOs, the researcher concluded that research
companies earned the majority of the profits. (Abergel). Applying this idea to gene therapy, the
research companies of gene therapy would naturally profit the most; hence, the price of gene
therapy would probably be expensive.
In the end, the findings concur with what was found in the review of related literature.
With the rejection of the null hypothesis, the findings conclude gene therapy is not cost-effective
or not worth the cost. Likewise, many criticized the price of Glybera; thus, the researcher
considered it safe to deduce that gene therapy treatments would continue to retain its
expensiveness. Will all treatments be around $1.6 million? Probably not as gene therapy
treatments are the future of medicinal.
Findings on Ethics
From the review of related literature, the researcher found that there are two types of gene
therapy treatments: gene healing and gene enhancement. As most individuals would not
question the aspect of healing, many may question the ethics of gene enhancement. Gene
enhancement would bring eugenics to a whole different level, and gene enhancement naturally
becomes the next step after gene healing (Rifkin, 2006). Nevertheless, scientists promise that the
focus would be on “repairing” rather than “replacing”; thus, scientists will postpone the existence
of gene enhancement treatments (Gert, 2001).
All this said, these precautions basically reveal even scientists consider gene
enhancement unethical compared to the less controversial gene healing. The researcher’s survey
aimed to determined what the majority thought about the ethicalness of gene healing and gene

33. GENE THERAPY 33
enhancement. In summary, the gene healing part of the null was retained; the gene enhancement
part was rejected. Thus, according to the majority’s opinion, gene healing is ethical (91%); gene
enhancement is unethical (65%). These results would support the precautions taken by the
scientists. With a mainly Christian-populated sample, the researcher concluded that most likely
the Christian morals and values conflict with a person “replacing” instead of “repairing” one’s
genes. Moreover, the most of the sample can be classified as “rich”; thus, the rich, who are most
likely the only ones able to benefit from gene enhancement treatments, would not agree with
such a procedure.
Despite the researcher presenting two distinct definitions for gene healing versus gene
enhancement, the line between these two types of gene therapy treatments can become obscure.
On the other hand, extremes definitely exist. For example, parents can genetically alter their
babies before birth to obtain super strength, intelligence, resistance to toxins, and many more
(Gert, 2001). On the other hand, gene healing can cure cancer.
Yet, where is the line between the ethical and unethical distinctly drawn? Taking a
previous example stated, one company intended to develop a treatment for hair loss for those
who suffer from chemotherapy (Anderson, 1999). This motive seems genuine and ethical;
however, a gene is added into a person’s genome. Therefore, in the end, this treatment is
classified as gene enhancement. Also, when humans grow old, their hair falls out or becomes
white. This gene would stimulate hair growth or even cause the hair to retain its natural color. A
person could easily argue when a man grows older, genes begin to become faulty; consequently,
these new genes inserted into the body will only repair the faulty ones. If the argument wins,
human beings will continue to look young and never look old; next, human beings will not only
preserve the outside appearance but the inward functions as well.

34. GENE THERAPY 34
In the end, the line separating gene healing and enhancement does not exist, but in the
future, a set location for such a line will most likely be debated frequently. For now, the
researcher’s findings state gene healing is ethical and gene enhancement is unethical.
Implications
Mainly, the researcher conducted the experiment to set parameters according to the
sample’s opinion. In other words, the researcher wishes to inform scientists on the public’s
opinion on the ideal price and potential limitations for gene therapy. These findings established
certain policies such as the ideal price of gene therapy. With a price range from $1,000 to
$9,999, the research companies of gene therapy would most likely achieve success in selling
their products. The second policy concerns the gene therapy’s research practice. Presently, the
researcher’s findings reveal the majority would remain uncomfortable if scientists researched
how to genetically enhance the human body; therefore, scientists should solely focus on gene
healing. Lastly, the findings distinctly lay out the majority’s thoughts on the extremes of gene
therapy; however, the obscure middle area remains untouched. So, a future study on where
exactly is the line between what is ethical and unethical in gene therapy should be conducted.
Conclusion
The researcher findings clearly laid out a portion of the public’s opinion on gene therapy.
While the findings may be biased towards high-income and Christian individuals, the findings do
present information worth considering in future research concerning gene therapy. In the
quantitative research design, the two null hypotheses tested were in the majority’s opinion, gene
therapy is cost-effective and in the majority’s opinion, gene therapy is ethical. The first null
hypothesis was rejected, leading the researcher to accept the alternative to the null hypothesis.
Simply, the majority believed that gene therapy was not cost-effective and would not be a worthy

35. GENE THERAPY 35
pursuit unless the price ranges from $1,000 to $9,999. The second null hypothesis was then split
into two subsections: gene healing and gene enhancement. For the researcher’s findings on
ethics, the researcher did not collect enough evidence against the null hypothesis with gene
healing but did collect enough evidence against the null hypothesis with gene enhancement,
leaving the first part of the null hypothesis retained but the second rejected.
Remaining Questions
All in all, these findings did lead the researcher to further questions. At the crux, gene
therapy is a treatment to pursue perfection through genetics. Then, what is perfection? In terms
of definition, perfection comes from “perficio,”––“to finish” (Lowndes, 2008). As a result,
“perfectio(n)” literally translates to “a finishing” (Lowndes, 2008). Perfection is “in essence, a
being or object in its whole, complete state” (Lowndes, 2008). Socially, this “whole, complete
state” of perfection means a beautiful body on the outside and a healthy body on the inside. In
other words, gene therapy can help one obtain inward and outward “perfection.” Like all good
research, the review of related literature leads the researcher to further questions involving the
concept of immortality, the role of healthcare insurance, the cosmetic industry, the nutritional
industry, and the use of genetic pedigrees or family trees. Nevertheless, the researcher focused
more on the last two subjects for question––the nutritional industry and the use of genetic
pedigrees (or more commonly referred to as family trees). So as a result of researching gene
therapy, the researcher looked into two related questions: (1) how are the nutritional supplements
industries impacting the United States economically today? and (2) how has the benefits of
genetic pedigrees affect the United States socially today?

36. GENE THERAPY 36
Nutritional Supplements
Also, as some people recognize health issues in the United States, they have acted upon
gaining a healthy body. Nonetheless, these actions may not include working out, exercising, or
eating right; instead, why not just pop in a nutritional supplement pill? According from a report
from Packaged Facts Nutritional Supplements in the U.S., this industry’s sales hit $11.5 billion in
2012 and predict sales hitting $15.5 billion by 2017 (Shultz, 2012). For example, the industry
Herbalife has collected revenue of $14 billion and continues to grow at a 5.7% annual growth
rate (“Vitamin & supplement manufacturing…,” 2013). With that statistic, the researcher
echoed the success of the nutritional supplements industry.
Currently, while multivitamins are not doing too well, “conditioned-specific products are
doing especially well” (Shultz, 2012). These products include digestive supplements, Omega-3s
(heart health supplements), joint health supplements, and eye supplements (Shultz, 2012). Joint
health supplements alone posted $140 million in sales (14% increase from the previous year);
eye supplements posted $114 million in sales (9% increase from the previous year) (Shultz,
2012). As clearly seen, many Americans utilized supplements for their ease in maintaining a
healthy body. Furthermore, the consumers over the age of 65 (Baby Boomers) make up the
“backbone” of market support for supplements in the United States (Shultz, 2012). On the other
hand, the supplement usage rates among younger consumers have been declining (Shultz, 2012).
Inevitably, the supplements industry holds a large influence on the United States’
economy. A study from National Products Foundation showed “the dietary supplement industry
to the U.S. economy is [earning] more than three times annual consumer sales, or $61 billion
dollars per year” (“New study shows…,” 2014). Beyond that fact, this industry provides through
production and sales a total of 450,000 jobs (“New study shows…,” 2014). The industry’s

37. GENE THERAPY 37
success makes the dietary supplement industry an important part of the United States economy.
In fact, it is connected to multiple other industries: retail and wholesale trades; real estate, rental,
and leasing; finance and insurance; professional, scientific, and technical services; and
manufacturing (“New study shows…,” 2014). As a result, the dietary supplement industry
becomes interconnected to other industries and ultimately the United States economy. With the
growth of sales in the industry, the extended effects on the economy remain as well, providing
sustainable jobs, manufacturing infrastructure, and health care benefits by way of prevention
(“New study shows…,” 2014). The industry is doing extremely well; even if the economy
becomes unstable, the industry will continue to find success (“New study shows…,” 2014).
The industries of supplements have rooted themselves for success in the future. They
continue to collect a large number of faithful consumers; as a result, their impact on the United
States economy has risen. Supplements now treat a wide range of parts of the body. As people
continue to buy these supplements to obtain a healthy body, this industry has connected itself to
the United States economy, such as providing 450,000 jobs. With the industry booming, the
pursuit of inward perfection can be clearly seen high on people’s priority list.
Genetic Pedigrees
The next remaining question revolves around the uses of genetic pedigrees and their
social implications. Today, genetic pedigrees seem to be a positive result of genetics in action,
showing that gene therapy will most definitely have positive consequences as well. Specifically,
since humans have long known that diseases seem to be passed down from one generation to the
next, the genetic pedigrees can become a powerful “screening tool” that has often been referred
to as the best “genetic test” (“Understanding genetics…,” 2010).

38. GENE THERAPY 38
Often, both common and rare diseases can be found in families (“Understanding
genetics…,” 2010). As a result, family history provides substantial information about a person
past and future (“Understanding genetics…,” 2010). In other words, genetic pedigrees allow
doctors to be able to diagnose at-risk family members for certain diseases. It is important to note
that not all diseases are childhood disorders but can be developed during a patient’s adult years
as well (“Understanding genetics…,” 2010). On the other hand, genetic pedigrees can also
accurately predict which common diseases would not affect a certain family; however, the
absence of a certain genetic disorder in one’s family history should not be rule out completely
(“Understanding genetics…,” 2010). In the end, all this information becomes crucial in the
identification of potential health problems in the future. For example, five to ten percent of all
breast cancer are found to be hereditary (“Understanding genetics…,” 2010). Another example
is Alzheimer’s disease, where in some cases this disease is hereditary (“Understanding
genetics…,” 2010). Therefore, the doctor and patient are able to act upon these potential dangers
to reduce risks by “implementing lifestyle changes and increasing disease surveillance”
(“Understanding genetics…,” 2010).
With family history being such an important tool, the use of pedigrees should be
encouraged and utilized. A pedigree is simply a visual representation of “family members and
relationships using standardized symbols” (“Understanding genetics…,” 2010). Information on
these pedigrees usually include general information such as names and birthdates, family origins
or racial/ethnic backgrounds, health status, ages of deaths and causes of death for each family
member, and pregnancy outcomes (“Understanding genetics…,” 2010). With such information,
genetic pedigrees should be updated more often in hopes to being able to avoid future problems
with genetic disorders or diseases.

39. GENE THERAPY 39
Nowadays, family trees have many uses, including the possibility of connecting with
unknown family members or the discovering one’s ethnicity. Nevertheless, pedigrees with
genetic information take the uses of pedigrees to another level. Pedigrees have the ability to
indirectly preserve life and health of patients. Sites, such as ancestry.com, have come to this
same realization and have offer the ability to form pedigrees with “advance DNA science” at the
cost of $99. Even with such a cost, people should consider forming their family pedigrees,
taking into account all the benefits that come with these simple family trees.
Biblical Connection
After considering how gene therapy connects to the world today, the researcher
concludes gene enhancement is not worth the cost when compared to the present consequences
of pursuing the ever-changing status of “perfection.” Even so, where does one draw the line in
enhancing the body? On the other hand, humans are still required to take care of their
appearance and sustain personal hygiene and even health. As seen through the use of genetics in
pedigrees, not all gene therapy treatments are necessarily “bad.” Nonetheless, in Psalms 139:13,
David writes, “For you formed my inward parts; you knitted me together in my mother's womb.”
In this verse, humans must acknowledge the work of God, who created humans individually and
uniquely. If scientists were to genetically alter God’s work permanently, this act defeats the
whole purpose of God creating each human being for His eternal good will. In other words,
humans now control their own genes, which was once surrendered to God’s will. While having
control of one’s own genes should be discouraged, the change is not plainly stated in the Bible to
be a sin. If it were a sin, one can argue that dyeing one’s hair color is a sin also. In approach to
this argument, 1 Peter 3:3 states, “Do not let your adorning be external–the braiding of hair and
the putting on of gold jewelry, or the clothing you wear.” In other words, God commands

40. GENE THERAPY 40
humans not to be consumed with the external. If humans are too focused on glorifying
themselves, they will miss the purpose of glorifying the God that truly deserves praise and
worship and glory. Therefore, when one considers genetic enhancements, one must ask the
question: What is the purpose of getting this gene replaced and whom would it glorify? In fact,
this question applies to many decisions today, but man remains confused on what his priorities
are. At the end of the day, the main priority is definitely the perfection found from within,
mentioned in 1 Samuel 16:7 with how “the Lord looks on the heart.” So, God desires virtuous
men; men that seek to glorify God rather than themselves. David was a man after God’s own
heart. While even David was not sinless and therefore not perfect, his heart was the Lord’s. He
pursued perfection in terms of a righteous life more than he sought outward perfection. Thus, if
gene therapy is ever to be utilized, it must lie in the boundaries of healing instead of
enhancement.

41. GENE THERAPY 41
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Black, J. (2012). As nature made them. Prevention, 64(4), 82. Retrieved from EBSCOhost
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Bouguerra, M. L. (2005). Gene therapy and research may benefit only the wealthy. Current
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42. GENE THERAPY 42
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43. GENE THERAPY 43
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ENGET0001&SingleRecord=True.

44. GENE THERAPY 44
Appendix
Copy of Survey
Hi, this is Kevin Chin. I am currently enrolled in a course known as Distinguished
Scholars Program (DSP), which allows students to research a topic of their interest. Having
researched Gene Therapy for my junior year, I now hold the task of collecting data for this
coming year. Please consider taking this survey for my research. Furthermore, if you would
share this link with others, I would be extremely grateful. Your response will remain anonymous.
Finally, taking this survey indicates your consent for your response to be used in my research.
Thanks again for your time.
1. Age
2. Ethnicity
a. Caucasian
b. African-American
c. Hispanic
d. Filipino
e. Asian or Pacific Islander
f. American Indian or Alaskan Native
g. Other
3. Occupation
a. Arts, Entertainment, & Sports
b. Business
c. Health and Medicine
d. Media and Social Sciences

45. GENE THERAPY 45
e. Public and Social Services
f. Science, Math, and Technology
g. Trades and Personal Services
h. Other
4. Personal Monthly Income
a. Less than $1,000
b. $1,000 - $4,999
c. $5,000 - $10,000
d. More than $10,000
5. Estimate the Average Amount Spent on Medical Treatments Annually in the Last 3
Years
a. Less than $1,000
b. $1,000 - $4,999
c. $5,000 - $10,000
d. More than $10,000
6. Religion
a. Christian
b. Jewish
c. Muslim
d. Hindu
e. Buddhist
f. Non-religious
g. Other

46. GENE THERAPY 46
7. Would you pay the price of $1.6 million dollars if a close family member had LPLD?
Glybera is the only gene therapy treatment on the European (not on American)
market. Currently, it costs $1.6 million dollars. A major contributor to the
development of Glybera, Dutch Company UniQuire, justifies this price by the simple
fact that Glybera reaches a small market of lipoprotein lipase deficiency (LPDP)
victims. LPLD causes a person to be inable to process fat; thus, the victim's blood has
high levels of fat, which causes adominal pain. Currently, a way to treat LPLD is to
eat a low-fat diet.
a. Yes
b. No
8. What would be your ideal price range for genetic therapy treatments?
Answer with comparisons to the cost of past medical procedures
a. Less than $100
b. $100 - $999
c. $1,000 - $9,999
d. $10,000 - $49,999
e. $50,000 - $99,999
f. $100,000 - $999,999
g. $1,000,000 - $2,000,000
h. More than $2,000,000
9. Is genetically healing a person ethical?
Genetic healing - the changing or replacing of a faulty gene to heal a disease
a. Yes

47. GENE THERAPY 47
b. No
10. Is gene enhancement ethical?
Gene enhancement - the adding or changing traits to the human body (could range
from changing hair color to becoming like Captain America)
a. Yes
b. No
Copy of Survey Results
Age (List of ages found below)
35 36 34 39 37 38 43 42 40 22 24 25 26 27 30 17 18 15 16 70 59 58 57 56 55 65 62 60 61 49 48
45 44 300,000 47 46 51 52 53 54 50
Ethnicity
Caucasian 144 72%
African-American 13 7%
Hispanic 9 5%
Filipino 2 1%
Asian or Pacific Islander 23 12%
American Indian or Alaskan Native 1 1%
Other 8 4%
Occupation

48. GENE THERAPY 48
Arts, Entertainment, & Sports 6 3%
Business 34 18%
Health and Medicine 22 12%
Media and Social Sciences 3 2%
Public and Social Services 16 9%
Science, Math, and Technology 22 12%
Trades and Personal Services 12 6%
Other 71 38%
Personal Monthly Income
Less than $1,000 25 13%
$1,000 - $4,999 51 27%
$5,000 - $10,000 26 14%
More than $10,000 86 46%
Estimate the Average Amount Spent on Medical Treatments Annually in the Last 3 Years
Less than $1,000 62 32%
$1,000 - $4,999 72 38%
$5,000 - $10,000 36 19%
More than $10,000 22 11%

49. GENE THERAPY 49
Religion
Christian 182 93%
Jewish 0 0%
Muslim 0 0%
Hindu 0 0%
Buddhist 0 0%
Non-religious 7 4%
Other 6 3%
Would you pay the price of $1.6 million dollars if a close family member had LPLD?
Yes 21 11%
No 171 89%
What would be your ideal price range for genetic therapy treatments?
Less than $100 12 6%
$100 - $999 41 21%
$1,000 - $9,999 70 37%
$10,000 - $49,999 42 22%
$50,000 - $99,999 20 10%
$100,000 - $999,999 5 3%
$1,000,000 - $2,000,000 0 0%

50. GENE THERAPY 50
More than $2,000,000 1 1%
Is genetically healing a person ethical?
Yes 175 91%
No 17 9%
Is gene enhancement ethical?
Yes 66 35%
No 125 65%
Number of daily responses