A Discussion of the Prospects and Ethics of Human Gene Therapy

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CAN MY DAUGHTER’S EYES MATCH HER SHOES?:
A DISCUSSION OF THE PROSPECTS OF HUMAN GENE THERAPY
Zachary Wool (zrw4@pitt.edu)
manipulated or changed them slightly to benefit the product
or cause. Farmers could, for example, be able to grow
produce that is able to stand up to harsher environments and
grow in the offseason. Life only has one language, one form
of code, and because of this, scientists can take genes from
plants that will work in animals and take genes from animals
that will work in plants and take genes from both plants and
animals that will, hypothetically, work in humans. Different
organisms have advantages in physical, personality, and
body system traits that are designed from plans on a cellular
level. Scientists take these genes and can insert them into the
genes of other organisms to create a hybrid creature,
something brand new, such as a goat whose milk contains
spider silk. The possibilities of what we could do is endless,
most certainly if you look at what we have already done [1].
INTRODUCTION: GENETIC
MANIPULATION, HOW FAR SHOULD WE
GO?
Where does science reach its limit? Should morality limit
how far we can go and when we should stop progression? If
so, where is that point and when do we know when we have
gone too far? With the completion of the Human Genome
Project, the scientists of today know more about the DNA of
humans than ever before, but what’s next? Genetic
manipulation is not new, plants and food have been
manipulated for years for our benefit, but could we do the
same to humans? The scientific truth is that genetic
manipulation of human DNA is not too far down the road.
However, we will reach a point where we go from enhancing
humans, preventing diseases and curing defects, to
advancing humans, changing the definition of human on a
cellular level. This point is as yet to be defined as we
continue to progress further and further into the future of
genetic engineering. As humans we need to decide what is
going too far. We must decide that there is a difference
between preventing birth defects and manipulating the
personality and physical traits of newborns. We currently
have human DNA and the more “improvements” we make
the farther we move from having true human DNA in our
cells. The question is becoming less and less could we splice
our DNA with other organism and more should we? My
generation is the next group of pioneers and developers. We
are the ones who will have to make these real life decisions.
We need to approach this as ethical engineers and find the
solutions that will improve both the health of patients and
society itself. Parents have their own views and decisions to
make for their children and people have their own rights to
decide how to manipulate their bodies, but we, the engineers
providing such new developments, need to decide how such
genetic modifications should be used. My goal is to help
people, not make them “better.” I hope when that day comes,
we will make the right decisions. In addition, a section will
be devoted to how such a project as this will benefit the
engineering community as a whole.
What we have already done to organisms
Scientists have experimented and had much success
with genetic engineering. Manipulation of the human genetic
code is still in the beginning processes, but genetically
modifying plants and animals is something we as a scientific
community have had decades of under our belt as we refined
our knowledge of DNA and the ways such molecular
substances interact between organisms. More advanced
experiments have produced results such as the transmission
of an insect protection gene, called Bt, to several crops such
as cotton and corn to ward off pests [2]. This gene has
protected crops from several harmful insects that would have
eaten or damaged the plants beyond any harvest value. Other
plants have been modified to stay ripe without rotting as
they are shipped from far locations [3]. Other examples are
such things as the “high oleic soybean…a GM [Genetically
Modified] plant that produces beans containing less
saturated fat” and human insulin that has been produced
from modified E. coli cells rather than manufactured.
Genetic manipulation goes further than plant and bacterial
life, however, and into more complex organisms. Transgenic
animals are used for both production of substances and
experimentation. We have already done so much with
genetic engineering to other organisms that genetically
manipulating humans on a much broader scale is the natural
step forward. But how big of a step should we take?
THE BASICS: WHAT IS GENTIC
ENGINEERING AND WHAT HAVE WE
DONE WITH IT
THE BENEFITS: HOW GENETIC
ENGINEERING CAN BENEFIT US NOW
AND IN THE FUTURE
How does Genetic Engineering Work?
The splicing of genes is nothing new. For decades
scientists have taken genes from plants and animals and have
1
University of Pittsbrugh, Swason School of Engineering
Oct. 9, 2012
Zachary Wool
“In humans, researchers have predicted that gene therapy
will not only allow us to treat and prevent debilitating
diseases…but also enhance or improve normal human traits”
[4]. Though the process of somatic cell gene therapy is still
in its early stages with little overall success, the promises of
what this technological breakthrough will do are incredible.
By replacing “bad” genes with “good” genes, the potential to
cure disease and prevent birth defects goes up exponentially
[5]. Even today we screen for birth defects and diseases in
embryos, but what if these diseases could be prevented in
ways other than terminating the embryo? Gene therapy
promises to be able to cure and fix such birth issues so that
infants can be born much healthier and live potentially
longer and improved lives. The first clinical gene therapy
was given to a young girl with adenosine deaminase (ADA)
deficiency in 1990. The main cause for ADA deficiency is
the deletion of the gene for ADA. This can be treated with
bone marrow transplantation, but a much more painless
treatment is to virally insert genes into the body’s cells. The
treatment was a great success and led to continued
experimentation with gene therapy [1]. Diseases such as
ALS, heart disease, inadequate blood flow to the limbs,
arthritis, and Alzheimer's are all caused in some fashion by
defective genes and, through experimentation, someday soon
those diseases and defects that plague us could be a footnote
in the past. Alzheimer’s may be the next smallpox, deadly in
its prime, but wiped out as medical science and treatments
advanced. The blueprints of a body are kept within the genes
and if we can replace or modify those, the possibilities of
what we can cure and create are experimentally endless.
we truly do not know how the human body will react. Is it
worth experimenting on men and women to discover this?
THE MORALITY OF GENETIC
ENGINEERING
Ethical Responsibility of Parents
“…when it comes to screening out personality flaws,
such as potential alcoholism, psychopathy, and disposition to
violence, you could argue that people a have a moral
obligation to select ethically better children” [7]. Parents
wholly control the upbringing of their offspring, but many
wonder if a temperamental child is caused not by a slacking
parent but by some predisposed genetic condition. The
definition of where nature ends and nurture begins is yet to
be determined, but societal ethics dictate that a parent or
parents should strive to guide their children into and through
this world. No child is the same and each has their own
strengths and weaknesses when it comes to academics,
social settings, or physical challenges. It is thought that
many of our skills are predetermined in our genes and that
they set the groundwork for where we shall excel and where
we will probably fall behind. Independence, the free will to
decide for ourselves, is a pleasure only given to us after
eighteen years under our parents’ guidance. Before that time,
our guardians have the right to choose everything and
anything for us.
The prevention of a mentally disturbed or lacking person
is something most would consider morally right. With the
right gene manipulation a parent could make these very
decisions months before their child is even born, but is that
not just a stepping stone to more trivial genetic changes that
ultimately remove the free will of the child? If a parent can
decide how smart, outgoing, or tall their child is, does the
child have any free will at all? Parents could genetically
engineer their child to be their perfect image of what they
want. How is that ethical? Prevention of hurtful aspects is
one side of the argument, but the prevention of unwanted
physical or mental traits has no place in society. Choosing a
child to be of lighter skin or a different eye color holds no
true purpose beyond useless desires. Parents have the right
to mold whatever child they choose, but they should never
have the option to choose they clay they use. A child cannot
choose their genetic advantages and neither should a parent.
THE SIDE EFFECTS: THE DRAWBACKS
TO GENETIC ENGINEERING
Into the Unknown
In experimental science we can hypothesize and redo the
equations as many times as we are able, but we truly do not
know the results until we actually do the experiment, which
is the purpose of the experiment in the first place. We say
nature is bound by certain laws, but scientists are surprised
every day as things do not work as they thought they should
or new things are discovered that we never thought could or
should exist. The simplest explanation is that although we
know a lot of about the human body, we do not completely
comprehend what will happen if we insert or modify genes.
“The human genome and our whole bodies area a maze of
complicated signals, pathways and relationships. A positive
change upstream could cause a negative effect downstream.”
[6]. No matter the benefits of an improved genome, for all
we know we could be opening ourselves up to some disease
we have never seen before. Our bodies adapt to their
environment and if we change our bodies and not our
environment, the results could be deadly. For all the
advancements we have made forward in genetic engineering,
Are we enhancing humans or advancing them?
What defines a human? Ignoring philosophical or
theological opinions, the basic, most scientific answer is our
genetic code. Our DNA is what separates us from all other
organisms and what makes us the creatures we are. Even an
infinitesimal percentage difference, which initially seems
insignificant, is truly a great difference between two very
difference creatures. Humans only differ from apes by 5-7%,
which, though considered an average error in many scientific
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Zachary Wool
experiments, is what makes us the creatures we are. Taking
this into account, how much can we change the human
genome before it can no longer be consider definably
human?
The question we need to ask ourselves is how much
enhancement can we make to the human genome before we
have advanced into a new species that is no longer human on
a cellular level. As we progress further and further into a
more “perfect” human, free of disease and defect, the further
we truly get from being the humans we are today. Evolution
is based upon minor changes in the genetic code and
artificial genetic manipulation is simply artificial evolution if
the trait is inherited. The gene of red hair is said to be rare
and even dying out. If we were to manipulate an embryo’s
genes so that he or she would have red hair the genetic trait
could become more and more popular in the population. If
other, dominant, traits are phased out over generations; red
hair would be the majority instead of the minority.
Advancing to a new organism is not necessarily an immoral
act, but if everyone has their genes improved it could
literally be the end of “human” history.
developing such treatments should know best and know the
ethical implications of developing these technologies.
The time is drawing near when my generation, the up
and coming engineers, will be the ones deciding on such
topics. We cannot fully draw on the ethical examples of the
past because such future scenarios have not been fully
realized as the usual practices. However, we must think upon
such issues now, for once that day comes to pass and the
wrong decisions are made, the harm would already be done.
We engineers must think ahead, beyond our time, and
develop ethical responsibilities specific to such future
treatments like human gene therapy. We must approach such
developments with a combination of ethical practices and
the open mindedness of scientific developments.
EDUCATING FUTURE ENGINEERS
As part of this discussion I will discuss the benefits of
doing a research paper such as this as a freshman
engineering student.
The United States is thought to be behind in many areas
of education compared to other nations around the world,
including engineering. Many believe this is due to the style
of teaching that our colleges and universities use. That is, to
give student a lot of foundational knowledge, but not much
experience in areas such as critical thinking and real world
applications. Many graduating engineering students are not
fully prepared to work in an engineering environment, where
there requires more creativity and thinking than following a
formula sheet [10].
The main issue that I can see with the general
engineering curriculums is that they are no different than
high school classes besides their rigor. Engineers are not
scientists who follow a plan or historians who recall facts,
but men and women who think outside the box and use
experience as their guide. Undergraduate engineers need
experience before they graduate so that their mind is
prepared to think about things how an engineer should, i.e.
not the plug-and-chug way.
Projects such as this, students researching a current topic
in engineering, not only opens students eyes to more
opportunities, but also gives them a taste of what they might
have to deal with in the coming years. As they go about their
research and list several solutions to problems, the basic fact
is that there is a great guarantee that we undergraduate
engineers will be the ones finding these solutions and
solving these problems. We may not as of yet have the well
rounded experience to apply ourselves to such tasks, but
through the next four years is when we should acquire
should an experience base. Internships, research, co-op, and
other jobs allow an undergraduate student to begin to
understand how to think and perform like an engineer.
This project specifically, should allow a freshman
engineering student to really dive deeper into what is it they
wish to make their profession. Most importantly, at the end
THE ETHICAL APROACH AS MODERN
ENGINEERS
A plastic surgeon cannot speak for why his or her patient
wants a kind of surgery, but ethical practitioners must decide
whether or not the performance of such surgeries is within
the ethical boundaries of their position. For instance, how
ethical is it for a teenage girl to get breast implants or a nose
surgery before she can even drive? There is no doubt that
such surgeries are performed and many arms are twisted
under the force of the several zeros written on the line of a
check. The same principles for doctors apply to biomedical
engineers as they progress further and further into genetic
engineering and the manipulation of the human genome.
Biomedical engineers must “consider the broader
consequences of their work in regard to….[the] delivery of
health care” [8]. Biomedical engineers need to know where
to draw the line, especially if patients do not. Every patient
has rights and bioengineers should respect that; however
they also need to realize the outcomes of taking on whatever
job such a client wants. The backfiring of genetic
manipulation could endanger human life, both of the patient
and the patient’s offspring, if such traits are inherited.
If Bioengineers accept trivial manipulations of human
DNA, they are the ones responsible for any consequences
and “shall accept personal responsibility for their
professional activities” [9]. Many in such offices fear the
legal consequences of medical malpractice, but the general
unethical harm of human life should be a greater inspiration
to perform ethically. Engineering is not a restaurant where
customers can order whatever they like from the menu and,
most assuredly, they are never always right. The engineers
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Zachary Wool
of their project they need to ask themselves: do I want to be
the one who solves this issue?
http://www.brighthub.com/science/genetics/articles/22210.as
px
[6] P. Arnold. (2009). “The Downside of Human Genetic
Engineering.” brighthub.com. (Online Article).
http://www.brighthub.com/science/genetics/articles/22211.as
px
CONCLUSION: SHOULD WE GENETICLY
MODIFY THE HUMAN GENOME?
Ethically, is it right to genetically modify human DNA?
To save someone’s life from death or prevent a painful or
difficult life, it is absolutely ethical. However, it is never the
same answer if we apply such procedures to everyday life
for simple and trivial acts. Genetic modification should not
become the next plastic surgery, used by the public to
change their features to their preference or given as a right to
parents to modify their child into whatever or whoever they
choose. No doubt that day will come, but we need to act as
ethical scientists, surgeons, and medical practitioners,
deciding whether such procedures are necessary, even if the
patients would pay top dollar for such results. We must
advance medical sciences to save lives, not dabble in selfish
physical modification. It is up to us, the future engineers, to
be educated and ready to approach such situations. We have
our code of ethics, but we need to apply it to new situations
that have never been seen or thought of before. We may not
be making those decisions now, but we need to begin to
think and act like engineers as undergraduate students
because someday we will have to make those decisions and
we need to be ready.
[7] A. Newman. (2012). “Genetically Engineered Babies
Are Moral Duty, “Ethics” Guru Claims.” New American.
(Online Article).
http://www.thenewamerican.com/culture/faith-andmorals/item/12564-genetically-engineered-babies-are-moralduty-%E2%80%9Cethics%E2%80%9D-guru-claims”
[8] Biomedical Engineering Society. (2011). “Biomedical
Engineering Society Code of Ethics.” (Online Article).
http://www.bmes.org/aws/BMES/pt/sd/news_article/52746/_
self/layout_details/false
[9] National Society of Professional Engineers. (2007).
“NSPE Code of Ethics for Engineers.” (Online Article).
http://www.nspe.org/Ethics/CodeofEthics/index.html
[10] University of Washington (2010). (Online Article).
“Improving engineering education: National study identifies
range of opportunities”. ScienceDaily.
http://www.sciencedaily.com/releases/2010/10/1010151858
38.htm
REFRENCES
ADDDITIONAL SOURCES
[1] P. Dixon. “Designer life, mutant animals, genetic
engineering, gene therapy, insurance - future health
speaker.” (2011). (Video).
http://www.globalchange.com/geneticengin.htm
M. Kitamura. (2012). “Modifying Human Embryos to
Thwart Disease Weighed in U.K..” Bloomberg. (Online
Articles).
http://www.bloomberg.com/news/2012-09-16/modifyinghuman-embryos-to-thwart-disease-weighed-in-u-k-.html
[2] R. Prakash. (2011). “Genetic Engineering Technology at
Work.” brighthub.com. (Online Article).
http://www.brighthub.com/science/genetics/articles/101758.
aspx
K. Notaro. (2012). “Ethics of Genetically Engineering the
Human Mind.” Institute for Emerging Ethics and
Technologies. (Online Article).
http://ieet.org/index.php/IEET/more/notaro20120331
[3] “Genetically Engineered Foods.” Science Informer.
(Online Article).
http://www.scienceinformer.com/Genetically-EngineeredFoods.html
R. Roy. (2012). “The perils of humans playing God.”
Financial Chronicle. (Online Article).
http://wrd.mydigitalfc.com/op-ed/perils-humans-playinggod-114
[4] J. Erikson. (2012). “Genetic Engineering Debate: Are
There Lines We Shouldn't Cross?” Policymic. (Online
Article).
http://www.policymic.com/articles/3971/geneticengineering-debate-are-there-lines-we-shouldn-t-cross
ACKNOWLEDGMENTS
A thanks to the scientific and medical communities for
all the progress they have made to better the health of
mankind.
[5] P. Arnold. (2012). “Pros and Cons of Genetic
Engineering in Humans - Part 1.” brighthub.com. (Online
Article).
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