Sydney Dydiw
THE ETHICAL DIMEMMA FACING BIOENGINEERS IN DECIDING TO VIOLATE THE TRADITIONAL MEDICAL PRIVACY CODE WHEN ATTEMPTING TO CURE HIV/AIDS
Sydney Dydiw
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Sydney Dydiw
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 cut-throat 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
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 level possible [4].The weight of the world’s health in respect to this epidemic virus is now in my hands.
WHAT’S AT STAKE AND ITS IMPACT ON THE WORLD COMMUNITY
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“HIVprovirus 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 hugely increased risk of certain cancers and other diseases, which makes HIV the gateway to augmented suffering if it is not stopped from spreading.
CASES I LOOKED TO AID IN MY DECISION
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 well-characterised 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, 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.
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 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 reflectupon 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.
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.
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.