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THE ETHICAL DIMEMMA FACING BIOENGINEERS IN DECIDING TO
VIOLATE THE TRADITIONAL MEDICAL PRIVACY CODE WHEN
ATTEMPTING TO CURE HIV/AIDS
Sydney Dydiw
(sld82@pitt.edu)
In the world of my scenario, my company’s name
will be Safe Cure and my boss is Dr. Wadsworth. Safe Cure
is a biomedical engineering company that is privately by
generous donors and publicly funded through the
government; they research and create biomedical devices,
such as machines to preserve artificial organs and
improving laser technology to detect cancer cells in patients,
therefore eliminating evasive, exploratory surgery. For Safe
Cure, I have been an employee there for the past fifteen
years, researching and developing various medical devices
but with my main goal of wanting to use the zinc finger
nuclease technology to cure HIV/AIDS. One lovely spring
day in June, I have my Eureka! moment while walking my
dog through my neighborhood; I rush us to the lab, call my
team that I have been working with, and we set to work on
the problem that has been keeping the zinc finger from truly
working on the patients and eliminating the HIV virus from
their systems. Through difficult team work and
collaboration, we finally perfect the technology to cure
HIV/AIDS and erase the virus from those who are already
infected. We march into Dr. Wadsworth’s office with smiles
all upon our faces because we know we have made history
and have done what engineers must do, according to the
Engineering Code of Ethics, we held “paramount the safety,
health, and welfare of the public” [4] and we possess one of
the main principles for engineers, since we “conducted
ourselves honorably, responsibly, ethically, and lawfully” in
order to magnify the professionalism and high standards
brought down on all engineers and their companies [4].
Albeit when we storm through Dr. Wadsworth’s doors and
explain everything we have just accomplished and worked
endlessly to achieve, he tells us to sit down, so he can
explain something to us. He tells us, “This work is fantastic
and will indeed change the world we live in today and in the
future. You should all be very proud. However, a major
problem still remains…” [5]. Dr. Wadsworth went onto
explain that I, as the project leader, must decide whether or
not to violate the code of Engineering by disclosing the
private medical records [4] of those infected with
HIV/AIDS to the public, so anyone around the world is able
to go to any medical facility and get the personalized cure
they need in order to be HIV/AIDS free. I also have the
option to not disclose the records, keep that part of my ethics
intact, but at the same time, HIV/AIDS could not be cured,
since it would have to be voluntary for the infected patients
to go to a hospital equipped to cure them, yet this would
mean I violate another part of the Code of Ethics by not
holding the safety and welfare of the public at the upmost
INTRODUCTION
To prevent HIV/AIDS (Human Immunodeficiency
Virus/Acquired Immune Deficiency Syndrome) is to save
millions of lives, bettering the mental and physical health of
patients and their respective loved ones when this
unfortunate and ever-present illness is eradicated. Using the
zinc finger nuclease (ZFN) technology, engineers are able
to modify the CCR5 gene to no longer code for the mRNA
that allowed HIV to continue in the infected living organism
due to deletion of CCR5D32, which creates a stop codon
and therefore makes the resultant protein shorter and not
able to function normally, leading to an immune system
malfunction [1]. As told by the World Health Organization,
over 35 million people were living with HIV/AIDs globally,
which rose a million in number since 2011, but the mortality
rate from this disease actually dropped thanks to new and
ground-breaking technologies aimed at targeting the
prevention of HIV from spreading and growing into AIDS
[2]. Biomedical engineers are the forefront of this research
and societal benefit, for they know that a healthy, general
populace is better than having an increasingly sick and
dying population of potential productive contributors.
Curing HIV/AIDS seems to be on the surface a fairly cutthroat issue when it comes to ethics, especially over should
we cure or should we let it alone. Obviously, we should cure
this dreaded disease, but how can bioengineers ethically go
about doing this? Since we work in healthcare, the needs of
the general patient populace must be considered above the
needs of the individual, but what if generally, the HIV/AIDS
populace do not want to have their medical records go
public? According to the Bioengineering Society’s Code of
Ethics, we must “regard responsibility toward the rights of
the patients, including those of privacy and confidentiality,
as their primary concern” [3]. The patients must always
come first in this field and be protected from breaching their
trust as stated in this point in the Code of Ethics, but when
dealing with such a monumental situation as this, the ethical
dilemma is raised as to whether bioengineers should make
the medical record stating the HIV/AIDS status of people
diagnosed with this disease publicly known in order for
hospitals and healthcare facilities around the United States
and the world have a global community without any citizen
being plagued by HIV/AIDS.
OVERALL CONTEXT OF THE SCENERIO
University of Pittsburgh, Swanson School of Engineering
Submission Date 2014-10-28
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Sydney Dydiw
level possible [4].The weight of the world’s health in
respect to this epidemic virus is now in my hands.
hugely increased risk of certain cancers and other diseases,
which makes HIV the gateway to augmented suffering if it
is not stopped from spreading.
WHAT’S AT STAKE AND ITS IMPACT ON
THE WORLD COMMUNITY
CASES I LOOKED TO AID IN MY
DECISION
Up to this point, AIDS could not be completely
alleviated, for the HIV virus is integrated into the human
genome, which means that you cannot kill the virus without
killing vital cells and possible the patient in question. ZFN
offers a new method that can erase the “HIV provirus from
the infected human T cell genome” [6]. My research in
developing the ZFN further to stop and prevent HIV
spread/infection more effectively than any other technology
developed before it’s time. This technology will help allay
and alleviate the epidemic that is HIV/AIDS. I desire to
approach all research and novelty technology I may be a part
of developing by searching for a worthy cause that plagues
our national as well as our global society. HIV does not
solely reside in the United States but plagues all humanity,
whether the individual has HIV/AIDS or knows someone
suffering through this virus. My understanding of
engineering encompasses the fact that engineers are
scientists who apply theory to create technology and
therefore better society; Progressing society is part of our
code of ethics, for we must always strive to better the
general health and security of the society we serve [4],
especially biomedical engineers. HIV plagues society by
decreasing the population due to the death caused by HIV
developing into AIDS, creating emotionally and physically
unhealthy citizens, and producing tension between those
who are oblivious to this disease’s true nature and those
inflicted with it. HIV does not improve the general
populace, so therefor it must be the mission of engineers,
particularly biomedical engineers, to exterminate
HIV/AIDS. The health of the world is at stake if we do not
make the zinc finger nuclease technology available for
public use on all HIV/AIDS victims. There, of course, exist
other such diseases the hinder the general welfare of society,
such as cancer, diabetes, malaria, etcetera. Albeit,
HIV/AIDS weakens the immune system of individuals
affected and therefore makes them more susceptible to
cancer and other such infectious diseases as their white
blood cell count is too low to put up a strong defense.
Therefore, if engineers are interested in lowering the cancer
patient populace, then they must have a concern for
HIV/AIDS prevention, which causes the infected people to
have a higher cancer-risk. According to H. Varmus, the
director of the National Cancer Institute, “People infected
with HIV are at least 25 times more likely to be diagnosed
with anal cancer than uninfected people, 5 times as likely to
be diagnosed with liver cancer, 3 times as likely to be
diagnosed with lung cancer, and at least 10 times more
likely to be diagnosed with Hodgkin lymphoma” [7] The
numbers are concrete and verified; HIV patients have a
SYNTHETIC BIOLOGY ARTICLE
In considering my dilemma, I looked to other
sources where engineers and scientists were faced with
ethical issues and they needed to make moral decisions
about them. The International Risk Governance Council’s
article on synthetic biology (“the development of wellcharacterised biological components with the objective of
constructing and redesigning natural biological systems”)
[8] tells about the ethical issues facing scientists who create
new pharmaceuticals and using hydrogen instead of
petroleum. These new technologies easily have potential
side effects on the society they affect, such as the ethics over
“converting nature into market commodities” [8] and the
unintended consequences to human health/the environment.
For example, a scientist creates a new birth control drug that
will help women lessen the symptoms of menstruation but
then the estrogen from the bodily waste of the women gets
into the water environments of certain aquatic life and alters
their sexual behaviors. The scientist could not have foreseen
this, but his/her decision had drastic environmental
consequences. This did not help me make a decision for my
ethical dilemma, for after reading, I was more scared than
ever to make a concrete decision and deal with its drastic
and unforeseeable consequences on the people it touches
and the environment.
PIRACY OR PRIVACY ARTICLE
Another source I looked over was an article about
email privacy in the work place. The employer wants an
employee to have all the emails on all the PCs in the office
on his desk by the next evening because he believes that
there have been inappropriate conversations happening, but
the employee feels that the other employees have the right
to talk about issues that they don’t want management to see,
since the U.S. does have the right to free speech. The
employee asks against her ethics and goes by her job
description in order to keep her employer from firing her
and because it is her job to do what the employer asks. I can
easily see the dilemma of choosing between what one
believes to be right and what keeps the paycheck rolling in
every month. When money gets involved with morals, then
the decision gets harder. The argument over money, in my
case the expense of the technology being mandatory, aided
in my decision, since I would never want someone to choose
between their health and their savings and I would not wish
to raise taxes or cause less funding for something else by
having the government fund the procedures. Then again,
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Sydney Dydiw
HIV/AIDS is an epidemic that has plagued the world for
decades now, so the money should not be a factor in making
a decision, for I am sure that people’s health will inspire
others to help pay for the procedures.
inform those who could possibly be infected with
HIV/AIDS that they might be carrying the virus, as it is
devastating and feasibly deadly disease [12]. I could also
make the procedures available to all who have HIV/AIDS,
but the procedures would not be mandatory. This would
lessen HIV/AIDS, yet there will not be a sure way of
knowing that the virus is eradicated from society once and
for all. The dangers with this are that people will get cured
who have the virus, but then those who do not know they
have HIV or who do not want to get treatment for personal
reasons are still able to spread the virus. The world would
be healthier and maybe with time HIV/AIDS could be
stopped, but it would be much longer than the other option.
Although there is another option, which might seem to be
the least aggravating choice: I could not make any decision
and give my work to another engineer or scientist and have
them make the decision. I could take the easy route and not
decide how to proceed and not face the inevitable
repercussions. This is a viable option that really looks out
for my own reputation, but it would say that I have no
leadership skills, no passion to follow through with a project
I love, and no courage. Dr. Seuss in his book, The Lorax,
states that “Unless someone like you cares a whole awful
lot, nothing is going to get better. It’s not” [13]. Though
science and engineering are an adult subjects, we as
engineers and scientists must never forget the wisdom
bestowed upon the children of the world and always
remember to think as a child would in certain situations.
Children are the most imaginative group of humans we
have, so with every decision we make, we must reflect upon
the consequences for our children and consider how they
would look at a situation. I do care an awful lot about this
project, so I must see it through and cannot even
contemplate that last option, though it is still an option.
SOMETIMES SILENCE IS GOLDEN
In the “Silence is Golden” article, I found a similar
case of ethics to my own in that the main person in question
has to decide whether or not to breach his confidentiality
contract. If I were to make the medical records of every
HIV?AIDS patient public, even though it would be for a
worthy cause, then I would be breaching the confidentiality
patients believe they receive upon entering any medical
facility. My actions could possible cause a domino effect
and leave the whole doctor patient discretion concept as a
sham, at least for the patients who were exposed. A contract
such as the one in this article would not be cause for death
and maybe there is the possibility that no one would find
out, but I could not live with myself knowing I went against
that contract, against my morals to abide by what I and other
people agreed upon to sign. Therefore, this article gave me
the courage to stick with my morals over what may be the
best and yet the worst for everyone. I cannot just think of
myself but the general interest of the public’s safety and
well-being as it states in the Engineering Code of Ethics I
abide by [4].
POTENTIAL DECISIONS AND
OUTCOMES
I have numerous options to choose from in regards
to what I could do with the research I have just developed. I
could make the records of every diagnosed HIV/AIDS
patient know to all medical facilities and demand that these
patients get the cure at those hospitals. This decision might
cause a lot of emotional and societal harm to those
HIV/AIDS victims who do not feel comfortable letting
everyone know about their condition. In addition, this case
violates the doctor-patient confidentiality clause known
around the world; by making an exception for HIV/AIDS,
there may be an increased reluctance by patients to get
diagnosed or go the doctor’s office in general whenever they
believe they have a disease that will be made public
knowledge. According to the American College of
Healthcare Executives, they believe that “healthcare
executives have a moral and professional obligation to
respect confidentiality and protect the security of patients’
medical records” [11]. This mandatory situation might also
cost the government a myriad of money, for how can we tell
people to get a mandatory operation that they have to pay
for with their own money. Or if the government does not
pay for the procedures, then there will be a lot of in debt, yet
newly physically healthy people in the world. On the other
hand, there is an ethical obligation that all doctors have: to
MAKING A DECISION
Keeping with the code of ethics for engineers in all
fields and in bioengineering and with my own morals, my
decision regarding the release of HIV/AIDS patients’
medical records to the public is to not release them. It is not
up to me to dictate how someone should live his/her life,
and I understand the societal repercussions of having
something so personal brought forth to people who could
easily ridicule me. Everyone, not solely Americans, has the
right to privacy and the right to act for themselves. Yes of
course, I want to eliminate HIV/AIDS, but I do not want to
do this at the expense of the people I am striving to help. I
cannot go against my morals, even if it goes against my goal
as a scientist, and maybe by slowly integrating this new zinc
finger nuclease HIV/AIDS cure, the HIV/AIDS virus really
will be eliminated from the modern world in the near future.
The HIV/AIDS eradication will just have to be gradual, as
a lot of science is.
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Sydney Dydiw
http://www.cancer.gov/cancertopics/factsheet/Risk/hivinfection
[8] G. Atkinson. (2012). “Synthetic Biology.” International
Risk Governance Council. (online article).
http://www.irgc.org/issues/synthetic-biology/
[9] Texas Tech University Staff. (2014). “Was that ‘Piracy’
or ‘Privacy’.” National Institute for Engineerign Ethics,
Texas Tech University. (online article).
https://view.officeapps.live.com/op/view.aspx?src=http%3
A%2F%2Fwww.depts.ttu.edu%2Fmurdoughcenter%2Fpro
ducts%2Fcases%2Fcase-1031.doc
[10] Web Guru Staff. (2009). “Sometimes Silence is
Golden.” Web Guru Guide to Undergraduate Research.
(online article).
http://www.webguru.neu.edu/professionalism/casestudies/sometimes-silence-golden
[11] Board of Governors of the American College of
Healthcare Executives. (2012). “Health Information
Confidentiality.” ACHE.org. (online article).
http://www.ache.org/policy/hiconf.cfm
[12] Lee. (2014). “HIV/AIDS Status & Privacy: An
Overview”. Ebscohost.com. (online article).
http://web.a.ebscohost.com/pov/detail/detail?sid=d0f5fefb1005-4e18-b18cf912654a6be0%40sessionmgr4004&vid=0&hid=4214&bd
ata=JnNpdGU9cG92LWxpdmU%3d#db=pwh&AN=2340
8904
[13] Encurious Writing Staff. (2014). “20 Quotes from
Children’s Books Every Adult Should Know.”
Encurious.com. (online article).
http://encurious.com/post/90982259223/quotes-fromchildrens-books
[14] The New Jerusalem Bible. Ed. Susan Jones. New York:
Doubleday, 1985. Print.
RECOMMENDATIONS TO ENGINEERS
AND CONCLUSION
For engineers facing an ethical dilemma and are
unsure of what decision to make, my advice is to follow
your instinct and your own moral character. Yes, there are
many Engineering Codes of Ethics, but the ethics that really
count are the ones we personally keep with us in our
everyday lives. As The Bible states in Deuteronomy 29:19,
“If anyone should think to himself, ‘I will do well enough if
I follow the dictates of my heart’” [14]. My decision may
not be what everyone agrees with, but it is the decision I feel
proud of and will not regret in the future. No matter what
connection a civilian or engineer has with HIV/AIDS, this
worthy cause needs to be cured, which will most assuredly
be done with the budding technology of the zinc-finger
nuclease. With the global duty and public awareness needed
for engineering. Engineering ethics has a foundation in a
desire to advance humanity, to make our world the best it
has ever been in order to escalate the global productivity,
and to create. I feel that we engineers will do just that, so I
will start with HIV/AIDS research prevention/cure to better
the community I strive to advance. Therefore, we engineers
must follow the guts that we used to get us into engineering
in the first place.
REFERENCES
[1] R. Badia, E. Riveira-Mun˜oz, B. Clotet. (2014). “Gene
editing using a zinc-finger nuclease mimicking the
CCR5D32 mutation induces resistance to CCR5-using
HIV-1.” Journal of Antimicrobial Chemotherapy. (online
article).
http://jac.oxfordjournals.org/content/69/7/1755.full.pdf+ht
ml. p. 69
[2] N. Seltenrich. (2012). “A ‘game changer’ for
HIV/AIDS.” Berkeley Engineering. (blog).
http://engineering.berkeley.edu/2014/02/game-changerhivaids
[3] Biomedical Engineering Society. (2004). “Biomedical
Engineering Society Code of Ethics.” Biomedical
Engineering
Society
(online).
http://bmes.org/files/2004%20Approved%20%20Code%2
0of%20Ethics(2).pdf
[4] National Society of engineers. (2007). “Code of Ethics
for Engineers.” National Society of Engineers. (online
article)
http://www.nspe.org/resources/ethics/code-ethics
[5] J. Wadsworth. (2033, June). Conversation.
[6] Q. X. (2014). “Zinc finger nuclease: a new approach for
excising HIV-1 pro viral DNA from infected human T
cells.” Pubmed.gov. (online article).
http://www.ncbi.nlm.nih.gov/pubmed/24973878
[7] H. Varmus. (2011). “HIV Infection and Cancer Risk.”
National Cancer Institute. (online article).
ADDITIONAL SOURCE
[1] S. Dydiw. (2014). Previous Knowledge.
ACKNOWLEDGEMENTS
I wish to thank Anne Schwan for aiding in my
adjustment to college research and in the process of
narrowing now my topic to be more specific and Libby
Ferda for devoting her time to explain this assignment to us
first year engineers. I also want to acknowledge my mother
for her continued support and Paloma Faith for keeping me
going through out this research paper process.
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