Science and Ethics for Graduate Students vs Bioethics for Undergraduates
Ann Boyd
One subject that is commonly taught in both graduate and undergraduate courses is the Human Immunodeficiency Virus (HIV) epidemic that causes Acquired Immunodeficiency Syndrome (AIDS). Students are familiar with the disease and know it has reached global epidemic or pandemic status. Compelling cases are easy to extract from the literature and the basic scientific information needed to understand the infection, mode of spread, and treatment options raise important ethical concerns. Most students are surprised to discover that they do not know important facts about the virus, how it is treated, and what the global impact of this disease may be. My approach is to describe the current situation of HIV/AIDS providing enough facts to give students a clear picture. The ethical issues evoked by the HIV/AIDS epidemic are then extracted and described in general. Finally the students engage in analyzing a case and then have some type of group work to share divergent perspectives about the case and proposed ethical action.
As of the beginning of 2003, the total number of people living with HIV/ AIDS is 42 million. During the previous year, 2002, there were 5 million new infections, and 3.1 million persons died of the illness. The global distribution of cases is not equal. There are close to 30 million infected persons in Sub-Saharan Africa, while North America reports only 1 million and East Asia 1.2 million. In South-east Asia there are 6 million cases but in Western Europe only 570,000. The estimate is that there are 14,000 new HIV infections a day at the current rate of transmission. More than 95% of the new cases are in developing countries; 2000 children under age 15 years and 12,000 persons in the age range of 15-49 years. If the current rate of infection continues, experts estimate that 100 million people will be infected by the end of this decade (2010).
Among the infected population only 5% receive antiviral drugs. These drugs are expensive, even when manufactured in low cost areas, the cost is beyond the health care allocation in many places and for many millions of people. The optimal treatment is to give one anti-reverse transcriptase and two anti-protease drugs so that two enzymes that are specific to the virus are inhibited thereby slowing down the rate of virus replication inside the blood stream. When the side effects of the drugs are tolerated and the patient is able to take the best therapeutic treatment, the amount of virus in the person is kept very low so that the immune system is not destroyed as fast. A person receiving such treatment may live 20 or more years without much disability. However, once a person is infected he or she is infected for life and remains infectious to other persons who share needles or exchange bodily fluids. The amount of virus is lower but there is enough to transmit the disease. The virus changes in response to the drugs and often becomes drug resistant. This means that the drugs a patient takes needs to be changed often and monitored constantly. The equipment and expertise to monitor the amount of virus in a patient and to detect drug resistant virus is important in treatment effectiveness but it also adds cost to the optimal treatment of patients. Many places do not have the infrastructure to test for virus and monitor for drug resistance.
Vaccines are being developed and several clinical trials are in progress in many different places. It is too soon to know if any of these vaccines are protective and subjects who have received the vaccines will have to be monitored for up to ten years to say for sure if any of the current vaccines work. Individuals who take part in the vaccine trials may produce antibody to the virus and in the future it will be necessary to be able to distinguish vaccine recipients from HIV infected persons. Currently, vaccine trials are being conducted in Europe, the United States, Thailand, Canada and Puerto Rico.
The distribution of testing facilities is unevenly distributed. Many people may not know they are infected and when a person learns he or she is infected with the virus it is not uniformly required that contacts at risk be informed. The issue of who knows about the infection and how privacy and confidentiality is handled varies among countries and within countries. If being HIV positive means nothing more than a death sentence, should anyone be forced to know? If no therapy is available, what is to motivate people to be tested?
Maternal to fetal transmission is reduced if the mother receives antiviral drugs just before delivery and does not breast-feed the infant. All women do not have access to prenatal care, antiviral drugs, or the means to feed the infant with formula. Only 4% of HIV infected women who desire therapy to prevent transmission to her fetus are able to get the drugs. If the transmission is prevented by providing drugs to the mother and she cannot continue to receive the drugs, the amount of virus in her will rapidly increase and her disease will continue to progress towards AIDS. There are already 10 million orphaned children in the world many of them are wards of the state or in the care of extended family members. Just distribution of drugs is an important factor in slowing the epidemic.
Since 80% of HIV-AIDS patients are in the 20-50 years of age group, the political, social, and economic structures of many nations are at risk. Education systems are failing, teachers are dying faster than more can be trained, and children are trying to work instead of going to school after one or both parents die. Funding for education is being cut in order to pay for raising costs of health care. Security forces are weakening. Agricultural production is dwindling. No segment of society is left untouched. This is the situation in South Africa but it may become the reality in many other developing countries within the next few years. In today’s interconnected world, if nations are left to disintegrate, the economic and political consequences will be felt beyond their borders. The current fastest growing infection rates are in Russia, India, and China. To curtail the epidemic, poor countries need drugs at affordable prices, and compliance by patients in taking the medication, regular testing, and clean water. In addition to just distribution of drugs nations need help establishing the physical infrastructure to deliver effective treatment and monitor the disease (Reynolds et al., 2003).
International cooperation is essential in controlling the HIV-AIDS epidemic. The Global Fund to Fight AIDS co-chaired by Nelson Mandela and Bill Clinton has raised 378 million dollars, which is enough to support infrastructure development and drug distribution in 31 countries for 2 years. It is a beginning but it is only a beginning. The United States pledged 15 billion dollars over the next five years, but again it is only enough to fund drug delivery to a small percentage of those infected. Every small step forward is helpful but much more needs to be done.
Dr D, a psychiatry resident, was paged by an intern in a large intensive care unit of a large hospital for an emergency consultation. Gary, a 28-year-old man had been hospitalized 11 days before for a rare form of pneumonia (Pneumocystic carinii). One week earlier he had been given a presumptive diagnosis for his illness: AIDS. On the day Dr. D was called, the medical team had told Gary he needed a catheter placed in his pulmonary artery but Gary refused to consent. He said, “Take the tubes away and let me die with dignity.”
Gary’s family (parents, sister, friend) consulted with the doctors who gave them the full details of his clinical status and prognosis. The doctors believed Gary has a 50% chance of surviving the pneumonia but may only live another 2-5 years with AIDS, much of the time with recurrent severe illnesses. However, the doctors told Gary’s family that advances are being made every day in the battle against HIV-AIDS so a future treatment may become available but we do not know when. The family talked frankly with Gary, discussed why he did not want to have more treatment, and consistently Gary said his reasons for refusing more treatment was about “quality of life.” Gary had a living will. Gary had no psychiatric history and had never attempted suicide. No person within his immediate family had died. He could not speak because of the respirator but he wrote notes to communicate. He was alert, initiated his own statements, was not tearful and did not consider his request to die suicide. Dr. D concluded that Gary was competent, not confused, psychotic or delusional but he felt there were signs of depression. Dr D paused…should he declare Gary competent and support his refusal for treatment or should he insist on a period of time to treat his depression and reassess the situation?
The undergraduate students are asked to write the case analysis giving justification for what ethical action they would propose. They are asked create a rule by which this and all similar cases can be evaluated. In the class session in which their case analysis is due, groups of 8-10 students meet in groups to discuss their analysis. The challenge is for each group to agree on what should be done. They will often disagree and need to discuss what differences of ethical justification are valid within the scope of the case. If they cannot agree on one action, they must present the decision options with reasons for disagreement. The point of the exercise is for each student to independently evaluate the case and decide what he or she thinks is the right action to take and give a clear reason. When the group discussion takes place, it is hoped that each student will learn to respect diversity of values and reasoning. Since ethics is not a prescribed right answer to a question, but a chance to reflect on the issues, facts, and concepts of each case, the discussion group becomes a dialogue opportunity. Students often remark that some other person made a good point that gave them a new perspective on the issues. It is important to recognize that all persons “know” about morality without being experts. Students may become excited in knowing they are asked to explore their moral sense and reasoning in a serious way. Disagreement among students requires willingness to listen to an opposing viewpoint, reconsider the position held, and respect differences. The preconception that there is one right thing to do is often changed in the dialogue experience as the group seeks an answer that all can agree is ethical. It is often true that in many medical cases, there are conflicting normative claims between doctors, patients, and the resources of society. Each student brings to the case his or her life experience but that does not mean he or she cannot learn to dialogue with others about ethical situations. Respecting and learning to hear different viewpoints often increases awareness and sensitivity to other persons (Boyd and Doering, 2001; Gutmann and Thompson, 1997).
This case is relatively simple. There is one patient whose autonomy is important. The doctor-patient relationship is important. If the doctor and patient agree to stop treatment, what is the basis of their agreement? How did the doctor respond to the patient? Should the doctor and patient reach a decision independent of the rest of the family, or should the family opinion be factored into the decision. Suppose that the doctor does not approve of the patient’s request. What duty does the doctor have to the patient that allows him to deny his request? Could the patient be referred to another doctor? These are straightforward questions that can be the basis of conversation among students so that each student becomes comfortable discussing what is important in such situations.
Graduate Case
You are the person in charge of setting up a vaccine trial. The vaccine contains the outer protein, gp120 of clade B and E (the two most prevalent types of HIV in the US and Thailand). Each person will get two injections spaced six weeks apart. At the end of three months each person will have blood drawn to determine antibody titer. At six months each person will get a booster containing more gp120 and coding regions of the core of the virus to produce a cytotoxic T lymphocyte (CTL) response. It is clear from scientific data that antibody alone is not protective. Your job is to design the vaccine trial: how to recruit volunteers, what they need to know, how you will select volunteers, how you will get consent, and monitor responses. You must get approval from the review board from all areas where the trail will be conducted. You plan to have a site in the US and one in Bangkok, Thailand. The Thai Ministry of Health has invited you to conduct the trial there. Will your trial have placebo controls? Design the clinical trial and present the design of it to an ethics panel of your peers. What questions do you think the ethics board will ask you?
The students write individual proposals and then meet in small groups to discuss the proposal. A number of students may be asked to serve as an ethics review board and review one of the proposals in open class session. They have time to discuss the questions and prepare the presentation. The fact that this clinical trial is to be conducted in two cultures raises the issue of universal guidelines for ethical evaluations. As international conferences and standards develop every culture will apply the ethical principles in ways appropriate for their culture. Gaining informed consent in Thailand may be similar or different from the process in the US. Students need to consider this carefully. Pluralism is a reality in most places in the world. It is not helpful to merely dismiss ethics as something set by time or culture without regarding the basic status of human persons as fundamentally human. While plurality and diversity should be respected and carefully evaluated in a flexible manner, it does not follow that there are no fundamental ethical principles that need to be considered in evaluating the good or right action as modern medicine and science increasingly challenge all societies with new developments (Callahan, 2000). When we reflect seriously, we see that we take some “universals” for granted and use them in practice such as our aversion to deception, killing, and torture.
Graduate students are professionally engaged in biomedical research and take the science and ethics class late in their curriculum, often in parallel with writing a research thesis. Their understanding of the development of vaccines, research data analysis, and promotion of the discovery of new ways of treating infections is built into their understanding of themselves as scientists. Few have ever imagined what happens to their discoveries once the data is published and the product is released in the world where politics and economics take control. An ethics course can offer the student the opportunity to think about the impact his or her research has on the wider world. Ethics then is not simply a professional code of conduct in the laboratory but reaches out to the globe. It is easy to develop a narrow perspective within the confines of a laboratory where daily work consists of experiments and contributions to manuscripts. What happens to the knowledge generated or the product developed once it leaves the lab? The ultimate aim of biomedical research is better medical care of patients. When students must imagine an international effort using their developed product, the challenge takes them out of the practice of science and asks them to see the larger service to humanity. By searching across cultures for common perspectives about how best to achieve the overarching goals of medicine in ways that respect professional practice and the humanity of persons, we can begin to gain international understanding. Enlarging the perspective to include diverse cultures, people and situations, helps us to better understand what our theories are about and how principles make sense in practice. Ethics is within ourselves. Theories and principles can hardly be better than the people (Zhang and Cheng, 2000).
Cases are intended to simulate real situations that occur in medical practice. The cases should not be so foreign to real clinical situations that the students will not be interested or will find the exercise trivial. However, the case should contain conceptual issues that provoke discussion: that is to say the answer should never be obvious. One answer is not necessarily right and all others wrong, for this would eliminate the need for discussion. The point of a case study approach is to engage students in sorting out the issues and the concepts and to make them aware of how they act in decision-making. One answer is not necessarily right and all others wrong, for this would eliminate the need for discussion. Students should understand that the important part of the exercise is the thoughtful analysis they offer the case.
The case study approach to teaching ethics has advantages and disadvantages. The advantages are that the students learn to reason independently, evaluate a variety of situations, be in dialogue with other students and thereby enlarge their own perspectives, awareness and sensitivity to diverse moral perspectives, and by the process of reaching consensus become part of a collaborative team in resolving complex ethical dilemmas. The disadvantages are that some students may take the case as a paradigm example of what to do in the future rather than engaging deeply in reflective and collaborative thought. It is difficult to design cases to fit every anticipated future experience therefore it is important that students recognize the process of reaching an ethical decision is more important than the individual cases used.
It is intended that students will recognize the complexity of real life and the moral puzzles in medical practice. Hopefully the students will be better prepared for situations of human drama and armed with logical tools to make a moral judgment and justify a proposed action. One student told me doing case studies was like taking simulator training for airline pilots: they get to practice situations and their moral reasoning before putting real persons at risk.
References
Boyd, A.L. and O. Doering. Teaching Bioethics in Two Cultures, Thailand and USA. Eubios Journal of Asian and International Bioethics 11 (2001): 184-189.
Callahan, D. Universalism and Particularism: Fighting to a Draw. Hastings Center Report 30 (2000): 37-44.
Gutmann, A. and D. Thompson. Deliberating about Bioethics. Hastings Center Report 27 (1997): 38-41.
Reynolds, S.J., J.G. Bartlett, T.C. Quinn, C. Beyrer, R.C. Bollinger. Antiretroviral Therapy Where Resources are Limited. New England Journal of Medicine 348 (2003): 1806-1809.
Zhang, D. and Z. Cheng. Medicine is a Humane Art: The Basic Principles of Professional Ethics in Chinese Medicine. Hastings Center Report 30 (2000): S 8-12.