Budny 10:00
L10
THE ETHICS OF PERSONALIZED TREATMENT OF METABOLIC
SYNDROME IN CHILDREN
Favour Oladipupo (foo3@pitt.edu)
INTRODUCTION TO PERSONALIZED
MEDCINE IN THE TREATMENT OF
METABOLIC DISORDERS AND ITS
ETHICAL CONCERNS
As a nation, we are gradually digging ourselves into a
deeper hole. Metabolic syndrome is slowly talking over our
children and the longer we take to realize the damages the
more devastating the results are going to be. Traditional forms
of medicine cannot meet the increased demand of treatment.
The solution to this problem is personalized medicine.
According to Francesc Palau, an author from the journal
Personalized Medicine, the ability to combine one’s
biological information with one’s personal environment and
translate it into a drug is the most effective way to treat any
disorder [1]. However there is cause of concern for
personalized medicine in reference to the quality of the
privacy of the patient’s information. In the real world, I as an
engineer would collaborate with a doctor in order for the
process of personalized medicine to be done. For example our
patient, Sally, comes in to my collaborators’ office, Dr.
Roseman, with symptoms of metabolic syndrome. Sally’s
parents begged Dr. Roseman for the best treatment that she
could give Sally. Naturally, Dr. Roseman suggested
personalized medical treatment. After thoroughly researched
it, Sally’s parents readily agreed to pursue personalized
medical treatment. As stated by Bill Frist, author of an article
in The Hill, the whole purpose of personalized medicine is to
target treatment specifically for Sally [2]. As perfect of a
method as personalized method seems it still encompasses
some ethical concerns. In order for us to personalized Sally’s
treatment we need very specific and personal genomic
information which runs into some ethical conflicts about
privacy. Considering the fact that Sally’s genes represents her
future self, they deserves special protection [3]. However, in
order for us to give Sally the treatment her genetic information
will be given to many different people from her physician Dr.
Roseman to the different engineers that I will be collaborating
with on her case. Despite the ethical roadblock of privacy, the
ability for Sally to be in control of her own syndrome gives
her empowerment to manage her disease and adjust her
lifestyle accordingly. With such an advanced and upcoming
treatment, there is a big price tag attached to it. Sally’s’
parent’s middle class paychecks may not be able to handle it
the big price tag. This is another ethical concern that adds
another mole hill to cross in the road to personalized
medicine. In the end, the only thing that matters is that Sally
changes her lifestyle by improving her diet, increasing her
University of Pittsburgh, Swanson School of Engineering 1
2013-10-29
exercise and knowing
predispositions.
her
limitations
and
genetic
WHAT IS PERSONALIZED MEDCIENE?
Personalized treatment is the future of medicine. Simply
put, it is healthcare that is targeted directly towards each
individual patient. The prevention, diagnosis, and treatment
of the disease or disorder are tailored specifically for the
patient [2]. Especially when dealing with children who suffer
from metabolic syndrome it is imperative that no time is
wasted, and they are given necessary treatment right away.
Metabolic syndrome and the positive effects of
personalized medicine
Metabolic disorders are destroying our children’s futures.
We are currently raising a generation of children who won’t
live as long genetic markers as their parents [2]. Moreover, it
is currently thought that genetic markers and particular genes
make up two-thirds of the symptoms that lead to metabolic
syndrome and the other third are attributed to pure
environmental effects [2]. Coincidentally, in the words of Bill
Frist, personalized medicine refers to the translation of the
interaction between the biological individuality of the patient
and the environment into clinical medicine and healthcare [4].
As stated by Francesc Palau, there are many aspects of the
individual that are factored into personalized treatment, from
the patient’s genomic variation, physiology, cellular
phenotype to their personal interaction with the environment.
Personalized medicine stands out from other forms of medical
treatment because of the specific and individualized
information that are used treatment. Once the physicians
obtain the patient’s medical information, we as engineers can
then process the data to provide a treatment specifically for
the patient. In Sally’s case, Dr. Roseman would obtain her
genomic information such as her specific genomic markers,
DNA, family history, and also question her and her parents
about her daily activity and interactions with the environment.
Then that information would be sent to us as the engineers.
From there, we will process the data and develop a treatment
that fits exactly to Sally’s lifestyle. However, such a new and
developing treatment is bound to have some kinks.
ENVASION OF PRIVACY
According to the National Society of Professional
Engineers code of ethics, engineers should not revel facts,
Favour Oladipupo
data or information about a patient without the specific
consent of the patient [5]. It may not be very evident in this
whole process, but Sally’s personal genetic information is
freely passed around many people from Dr. Roseman to me
and all of the engineers that I am collaborating with. Ideally,
we should notify Sally and her family every time someone
else access’s Sally’s genetic information, however it would be
tedious and is overlooked as not a major problem. Also
According to the National Society of Professional Engineers
code of ethics, the fact that we are working with physicians
should not mean that we should deviate from doing things in
an ethical manner [6]. In our current age of technology,
everything is computerized. We are no longer in an era where
people jot down their social security numbers or other private
information on paper and lock them away in safes. Now
people use apps on their phones or computers to store such
important information. On the positive side, the advancement
of technology opens the door to more sophisticated and useful
personalized treatment, resulting in a new healthcare
revolution [2]. However, with the increasing dependence of
computerized file cabinets there has been a decrease in the
level of privacy online. Hacker attacks have emerged as an
urgent challenge for governments and corporations around the
world in recent years [7]. This presents a problem when
genetic information is being sent through the internet between
the engineers and physicians. With the rising threat of
computer hackers, it is a real possibility that Sally’s private
genetic information could become public. The caution is that
for fear of loss of privacy that we as a society will forestall
the improvement of personalized medicine [8]. The
movement towards electronic medical records and the general
dependence of technology and the depleted sense of privacy
is an ethical concern that stands as a roadblock for
personalized medicine.
with the same amount of drive and money as we do for cancer;
both lead to serious life-threatening complications. There is a
common need to establish innovative programs for targeted
prevention and individualized treatment of metabolic
syndrome. One of the central aspects in the performance of
personalized medicine is the economic challenge of
implementing cost-effective treatments and maintaining longterm investment in predictive diagnosis [10]. In order for us
to move forward in personalized medicine our society has to
conjure up a way to produce the money needed. Granted in
order for us to put more money into something, usually there
is an exchange and money must be taken out of something
else or shuffled around from sector to sector. This is where
our major ethical controversy lies. What area in our
government will receive budget cuts? If there are some
programs that are not necessary for society than, cutting them
in order to fund a better cause would be more beneficial.
However, another way for us to raise funds is by slightly
increasing taxes. That statement itself is bound to cause a lot
of stirrup among our society that believes it is taxed to the
max. What we must realize is that, while a little more money
is taken out of our pocket it is being put to a good purpose and
will eventually benefit themselves as well. It will be a
challenge to make the necessary adjustments, but it will
definitely be worth it. The most important thing is that we all
unite as a society in order to push personalized medicine
forward. If we are not all in it together then it will not be as
effective as it should be. While personalized medicine is
important for any disease, disorder, or syndrome, it is urgently
important for metabolic syndrome in children.
WHY THE URGENCY FOR
PERSONALIZED TREATMENT FOR
METABOLIC SYNDROME IN CHILDREN?
ECONOMICAL CONCERNS ABOUT
PERSONALIZED MEDICINE
This is not cancer, or any other seriously life threatening
disease that most people are more concerned about, so why
should we devote our resources to metabolic syndrome?
Metabolic syndrome has been overshadowed by diseases such
as cancer for a very long time and especially among children.
Most people view obesity as an internal problem, a result of
one’s lack of self-control. However, what we do not realize is
that these children are hindered by their genetics as well as
their environmental choices, and are partially helpless.
Because of a false impression that metabolic syndrome is
merely a lack of self-control among the victims, not enough
funding is put into treating metabolic syndrome. According to
kidshealth.org “a study of 375 second and third graders found
that 5% had metabolic syndrome and 45% had one or two risk
factors for it” [11]. One might ask what the cause of urgency
is with only 5% of children being effected by metabolic
syndrome. However, we must not overlook the 45% that
present the symptoms and risk factors for it. If the risk factors
evident in 45% of children are overlooked, it can result into
complications such as arteriosclerosis, poor kidney function,
Another boulder that stands in the way of the progression
of personalized medicine is the economical logistics of
personalized treatment. This advanced treatment requires a lot
of advanced technology and a collaborators of many people.
These all require a lot of money that not every family has.
Sally’s family for example is just your average middle class
family. Where would they get the money for this treatment?
This is a major problem that is probably one of the biggest
mountains that must be conquered in order for personalized
medicine to be successful. Solutions to these problems
include; enhancing public funding, public-private
partnerships, and open-source consortia. In order for us to
move forward and create a better future for generations to
come, we must all pitch in as a society to build a public fund
for this cause [9]. While we should not drive ourselves into
dept., it is important to weigh the pros and cons. We should
invest into personalized treatment for metabolic syndrome
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insulin resistance, polycystic ovarian syndrome, and
acanthosis nigiricans [11]. Arteriosclerosis, for example,
occurs when cholesterol hardens and begins to build up in the
walls of arteries, which causes blockages that can lead to high
blood pressure, heart attack and stroke [11]. It is hard to
understand such serious diseases occurring in children, but
this is the severity of metabolic syndrome in children. In order
for us to preserve our future, we as individuals must
acknowledge the urgency of this situation and take the
appropriate strides to treat metabolic syndrome. In Sally’s
case, she was part of the 45% of children that showed signs
and symptoms of metabolic syndrome and because of lack of
prior knowledge of the severity of the disorder she developed
metabolic syndrome. If we don’t want this to repeat among all
of our children, it is important for us to take immediate action.
Economically wise however, I strongly feel that it is our job
as a nation to consolidate all of our resources into funding
personalized medicine so that it can develop into a feasible
treatment, and it can become perfected.
REFERENCES
[1] Francesc Palau (2012) “Personalized medicine in rare
diseases” Personalized Medicine (online article)
http://go.galegroup.com/ps/i.do?action=interpret&id=GALE
%7CA284272305&v=2.1&u=upitt_main&it=r&p=AONE&
sw=w&authCount=1 p.137
[2] Bill Frist (2012) “Personalized medicine” The Hill (online
article)
http://go.galegroup.com/ps/i.do?action=interpret&id=GALE
%7CA297310228&v=2.1&u=upitt_main&it=r&selfRedirect
=true&p=AONE&sw=w&authCount=1
[3] Mildred K. Cho (2013) “Privacy issues in personalized
medicnine” Pharmacogenomis (online article)
http://rt4rf9qn2y.search.serialssolutions.com/?ctx_ver=Z39.
88-2004&ctx_enc=info%3Aofi%2Fenc%3AUTF8&rfr_id=info:sid/summon.serialssolutions.com&rft_val_fm
t=info:ofi/fmt:kev:mtx:journal&rft.genre=article&rft.atitle=
Privacy+issues+in+personalized+medicine&rft.jtitle=Pharm
acogenomics&rft.au=Laszlo+T+Vaszar&rft.au=Mildred+K+
Cho&rft.au=Thomas+A+Raffin&rft.date=2003-0301&rft.pub=Future+Medicine+Ltd&rft.issn=14622416&rft.volume=4&rft.issue=2&rft.spage=107&rft_id=inf
o:doi/10.1517%2Fphgs.4.2.107.22625&rft.externalDocID=2
368555591&paramdict=en-US
[4] Francesc Palau (2012) “Personalized medicine in rare
diseases” Personalized Medicine (online article)
http://go.galegroup.com/ps/i.do?action=interpret&id=GALE
%7CA284272305&v=2.1&u=upitt_main&it=r&p=AONE&
sw=w&authCount=1
[5] National Society of Professional Engineers Code of Ethics
II
[6] National Society of Professional Engineers Code of Ethics
III
[7] James Hookway (2012) “Computer Hackers Target
Cambodia” The Wall Street Journal (online article)
http://search.proquest.com/docview/1038034093
[8] Denise Avard (2010) “Principled personalized medicine?”
Personalized Medicine (online article)
http://go.galegroup.com/ps/i.do?id=GALE%7CA244535053
&v=2.1&u=upitt_main&it=r&p=AONE&sw=w
[9] (2012) “Personalized Medicine; Who pays for
personalized medicine?” Expanded Reporting (journal
article) p. 6
[10] Vincenzo Costigliola (2010) “Healthcare overview:
global process of personalization in medicine” EPMA (journal
article) p 525-528
[11] (2013) “Metabolic Syndrome” KidsHealth from
Nemours
MY PERSONAL OUTLOOK ON THE
ADVANCEMENT OF PERSONALIZED
TREATMENT IN METABOLIC SYNDROME
AND ITS ETHICAL BOUNDARIES
I am a big proponent for the advancement of personalized
medicine especially in the field of metabolic syndrome. I
believe that in order for us to defeat metabolic syndrome, we
as a society can begin by raising awareness in our
communities, as I did in high school. I founded a club in my
high school, the Health and Wellness Club. My club’s goal
was to educate young students about healthy living with
interactive, original activities, and informative discussions. In
this club, I was able to see firsthand what the effects of
metabolic syndrome had upon children. Not only does it
hinder them physically, with a lack of athleticism, but it also
lowers their self-esteem immensely. I watched the effects of
metabolic syndrome in the young students affect their daily
actions. One student in particular had such a difficult time that
he could not physically present his project in front of a
classroom without shaking uncontrollably and looking around
nervously. As this student started explaining a picture of a
food pyramid, as a part of one of his activities, his classmates
responded with spurts of giggles and name calling, causing
him to break into tears. These scenarios break my heart. As
individuals, we should do everything that we can to influence
our own towns in standing up to the lack of action taken
against metabolic syndrome. As bioengineers, we can take a
more proactive approach against metabolic syndrome through
personalized medicine. I don’t want what happened to this
student to happen to Sally. I will acknowledge the fact that
there are concerns regarding privacy and economics that
might prevent people from moving forward with personalized
medicine. However, these are minor concerns that all have
logical solutions. Regarding privacy. It is very feasible for us
to control where Sally’s information is transported to. Also,
Sally and her family can be informed before anyone reads
anything personal and private about Sally. This way Sally and
her family can feel some sense of control of Sally’s treatment.
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http://kidshealth.org/parent/medical/endocrine/metabolic_sy
ndrome.html#
ACKNOWLEDGEMENTS
I would like to thank Mrs. Edelman for helping me build the
foundation of my paper. I extend a special thanks my parents
for everything that they have done for me, and their continued
support.
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