This paper will examine the ethical issues related to HIV/AIDS testing, treatment, and research. Key issues analyzed include confidentiality, informed consent, and end of life, research design, conflict of interest, vulnerable populations, and vaccine research. Although many examples are drawn from the United States, these issues are also explored from a global perspective. Major U.S. and international legal statutes, regulations, and guidance documents provide the context for the analysis and recommendations.
There are three widely recognized principles in American bioethics that apply to both clinical and research ethics: respect for persons, beneficence, and justice. Respect for persons entails respecting the decisions of autonomous persons and protecting persons who lack decision making capacity and therefore are not autonomous. It also imposes an obligation to treat persons with respect by maintaining confidences and keeping promises. Beneficence imposes a positive obligation to act in the best interests of patients or research participants. It often is understood to require that the risks of research be minimized and that the risks be acceptable in light of the potential benefits of research. Finally, justice requires that people be treated fairly. It is often understood to require that benefits and burdens be distributed fairly within society. (Lo, 2000)Although the ethical principles are useful guidelines that help to focus discussion, they cannot be mechanically applied. Nor are they absolute; exceptions to the principles may be appropriate in particular cases. Furthermore, they often conflict. Accordingly, these ethical principles must be interpreted in the context of specific cases. (Beauchamp, 1994) Although appeal to these three principles is the dominant approach in American bioethics, other approaches have been suggested and vary dramatically according to different trains of philosophic thought:•The utilitarian perspective embodies the idea that acts should be evaluated according to their consequences.
•The deontological approach stresses that research ethics should be guided by generalizable rules or obligations.
•The casuistry approach uses paradigmatic cases to guide decision making.
•The ethic of caring judge's acts based on their effect on relationships.
•Communitarians evaluate acts based on their consequences for the community.
•Virtue ethics focuses on the motivation or character of the actor, rather than the act itself.
The application of these principles to cases outside the United States has been the subject of considerable debate.(Marshall, 2001 & Macklin, 1999) In particular, the emphasis on individual autonomy has been criticized as representing an Anglo-American perspective that may not be shared by other cultures that may place greater importance on community.(Marshall, 2001) Nevertheless, widely accepted international ethical guidelines do embrace the fundamental principles of autonomy, beneficence, and justice. These principles therefore provide an appropriate ethical framework both inside and outside the United States.
Clinical EthicsIn the United States, all medical information generally is considered confidential and protected under the law. Because of the sensitivity of HIV-related information, many states in the U.S. have adopted laws that provide additional protection to HIV-related medical records. For example, in many states, HIV information may not be disclosed based on a general release of medical information-specific authorization for release of HIV-related information must ...