Medical Ethics: AIDS, Informed Consent, and Experimental Treatment
Experimental treatment, and the research that supports these new medical practices, is essential to the evolution of modern medicine. It would be irresponsible to not consider the ethical ramifications of our progress. Medical ethics exists for this very reason. It stands a voice of moral reason in the midst of complicated interests and procedures. It allows a patient the right to know and give permission concerning treatment, also known as informed consent. All forms of ethically sound experimental treatment and medical research must rest soundly on the idea of informed consent. However, medicine does not exist in a cultural vacuum. Both medical professionals and patents are affected by the culture they live in. With the recent popularity of television medical dramas, we find complex ethical and moral issues presented in a short hour. Their real-life counterparts are often much more perplexing. By addressing these issues in popular culture, we are encourages to closely examine complicated issues of medical ethics.
The long-running crime drama Law & Order often delves into topics concerning difficult ethical questions. The focus of a recent episode “Positive”, aired Apr. 5, 2006, discusses the case of an established doctor who ran a treatment program for children with AIDS. The charity program often treated homeless and foster children. While under the care of this doctor, a young girl died. This death would not have been considered unusual; the child was in the final stages of full-blown AIDS. What was unusual was the combination of pharmaceuticals found in her body during autopsy. The doctor had not only been treating her with five AIDS drugs, as opposed to the usual three, he had injected her with a drug not yet approved for use in humans. Investigators found that she died directly from the effects of the drug. In a shocking plot twist, the doctor treated his own AIDS with the drug and had seemingly found an effective treatment.
This episode raises many complicated ethical questions concerning informed consent, experimental treatment, and the treatment of an epidemic such as AIDS. As discussed in “AIDS and Ethics” Ronald Bayer, Professor at the School of Public Health, Colombia University states that many AIDS patients demand to be part of experimental treatment programs. By many, it is considered a right (Bayer 406). If there is such a demand for experimental treatment, why would the parents of a dying child object? In the case of the child discussed by Law & Order, the parents had no idea what type of treatment their foster child was receiving. This not only undermines the fundamental idea of informed consent, it violates the established spirit of medical research or experimental treatment.
Informed
consent is defined by Tom L. Beauchamp, Senior Research Scholar at
In the case of a minor, it is legally acceptable for a parent or guardian to decide treatments on their behalf (Beauchamp 197). When this figure makes the decision for the patient, they are required the same informed consent as would be given to the patient. Informed consent is comprised of four steps: disclosure, comprehension, voluntariness, and consent (Beauchamp 193). The physician on Law & Order violated the spirit, if not the letter, of all of these ethical steps. He failed to disclose the nature of the treatment, establish the foster parents understanding of the treatment to make a decision, have the parents volunteer their child for the treatment, or even obtain consent. He willingly bypassed the spirit of the law by pointing to the blanket statement that was signed in regards to treatment.
Experimental treatment and medical research must rest securely on informed consent if they are to be considered ethically sound. As with other ethical dilemmas, the language involved is essential to the legislation and practice of experimental treatment or research. As discussed by A. M. Capron, University of Southern California, key terms such as research and therapy; therapeutic and non-therapeutic; and benefit, while commonly used, are host to subtle nuances that make their definitions unclear. It is in the definition of these terms that ethical reasoning is discovered (Capron 135). Experimental treatment is considered to be a case by case study involving a doctor/patient relationship. It is not required to be peer reviewed or overseen by a governing body. Within this treatment, however, physicians are still held to the traditional Hippocratic injunction to do no harm. Treatment must be intended to improve the situation of a patient. Any experimental treatment that is intended to harm the patient or to satisfy a doctor’s curiosity regarding a disease is a clear violation of medical ethics. Conversely, research detonates an activity designed to test a hypothesis regarding medical treatment. This definition proves problematic. Under this, any treatment option could be considered research because a large part of a physician’s job requires testing hypothesis about a particular patient and what treatment options would prove beneficial. To be considered credible, clinical research must be subject to a number of protocol reviews. These committees are intended to review the ethical ramifications of an experiment, insure that all involved are treated in accordance with the proper legislation, and to make sure the research is considered “scientific”. Even with the essential consent in human experimentation, the results of experimentation are useless unless reviewed by the proper scientific committees. If non-validated practices are carried out without proper protocol, they cannot be justified by their benefit to science. Because such practices lack a valid basis in science they cannot be defended for the benefit they will provide to future patients. Above all, both treatment and research must be carried out with the intent to heal or improve quality of life for patients. Without restriction and review, research could possibly do more harm than good toward humankind. (Capron 139-142).
Historically,
ethical human research has been based on the ideal of respect for competent and
incompetent persons. A basis for personal respect is attributed to Kantian
ethics, stating that “actively to do a person harm is to use him or her as a
means to some end (good or perverse) not of his own choosing” (Capron 150). This
point seems almost redundant, but in the light of such atrocities as the Nazi
experiments or the Tuskegee Syphilis experiment we must be reminded of other’s
basic human rights. It must also be noted that the cruelty of the research
had much to do with the fact that the subject were seen as subhuman.
Undoubtedly, the subjects in Nazi research were treated with unspeakable cruelty
and disrespect for human life. Should the information their suffering be
completely dismissed? As discussed in “Holocaust
on Trial” by NOVA, the Nazi research concerning hypothermia has been long
cited in scientific journals and the data has been used to create suits to
protect people from near freezing temperatures. Research like this could never
have been obtained ethically. Using unethical research is an emotionally
charged subject. Proponents claim that using the research would benefit all of
mankind and help to atone for the atrocities. Opponents claim that it sets a
dangerous standard of human rights violation and gives credibility to unethical
medical research (NOVA). Regardless of the use of the data, the basis for modern
medical ethics concerning research or experimental treatment was written in
response to Nazi cruelties. Known as the Nuremberg Code, it states “The
voluntary consent of the human subject is absolutely essential” (Capron 146).
From this statement we attain the basic standard of ethical research or
treatment; this must be at the core of all human research.
Although gross examples of abuse of research subjects can never be justified by their benefit to a society as a whole, the concept of justice in relation to research must be addressed. While the concept of justice is important in Western culture, it is rarely applied to experimental treatment or research. In the light of an epidemic, such as AIDS, how is justice best served? As research is essential to medical advancement, questions concerning who must bear the burdens of research and who deserves to enjoy the benefits. If research is to be considered an egalitarian pursuit, the burdens must be spread throughout all races, cultures, and socioeconomic classes. Currently the burden falls primarily on the desperate, the very sick and very poor. Historically experimentation has been performed on charity patients who knew very little about what was being done to them. These charity cases were not regarded as individuals, but as martyrs to a greater cause (Capron 153). Addressed by Law & Order, experimentation on charity cases is still integral to the establishment of clinical research. Justice has also become an issue in federal clinical trials for new AIDS drugs. Thousands of desperate AIDS patients enroll in clinical trials willing to try new drugs despite the risks and randomization of treatment. Half of all patients that sign up are placed in a control group, effectively given a placebo. Many AIDS patients have complained that it is unfair to exclude them from access to experimental drugs, as the virus is considered a death sentence.
More than merely a philosophical pursuit, medical ethics directly affect
the lives of millions of persons worldwide. As a society, we must be willing to
face the repercussions of our medical advancement and to weigh the cost of
progress. Polio was one of the most dreaded childhood diseases of the 20th
Century in the
Medicine must have the ultimate goal of physical wholeness in the light of disease. Physicians are entrusted with the lives of their patients and must do everything within their power to treat illness. Informed consent must be respected, especially in the cases of experimental treatment. Medical research, while extremely important, must be confined to an ethical, scientific setting. These ideals exist to ultimately protect patients and physicians; they exist to protect us from ourselves. In our desperation for a cure, we must not sacrifice the ethical standards that give credibility to medicine.