Ethics in special contexts: biomedical research, genetics, and organ transplantation

Abstract

Parts I, II, and III of this volume have examined the roles, history, and methods of health care ethics, the moral foundations of therapeutic relationships, and moral issues at the beginning and at the end of life. Part IV will consider complex moral questions encountered in three specific health care contexts: biomedical research on human subjects, health care for genetic conditions, and organ transplantation. Chapter 19, “Research on human subjects,” begins by recognizing the importance of biomedical research for achieving the beneficent goals of health care. It also recognizes the potential for grave harm to research subjects, illustrated in the Nazi medical research on concentration camp inmates and the Tuskegee syphilis study conducted by the US Public Health Service. The chapter goes on to examine basic criteria for morally defensible research on human subjects: informed consent, assessment of risks and benefits of the research, confidentiality, and equitable selection of subjects. It concludes with a discussion of who bears what responsibilities for the protection of human research subjects. Chapter 20, “The genetic revolution,” describes both the great promise of the emerging practice of “personalized genomic medicine” and the great peril of misunderstanding and misuse of genetic information evidenced in the morally abhorrent eugenic sterilization and extermination programs of the twentieth century. The chapter examines moral questions in three domains of genetics activity: biomedical research, health policy, and clinical medical care. The discussions in this chapter focus on the use of genetic testing and the disclosure of genetic test results in various settings, including prenatal care, care for newborn infants, pediatrics, and adult medicine. The volume's final chapter is Chapter 21, “Organ transplantation.” This chapter describes the emergence and growth of transplantation as a life-extending intervention for patients with a catastrophic medical condition, end-stage organ failure. The success of transplantation has stimulated great demand for this treatment, and the available supply of transplant organs has not kept pace with the increasing demand. Faced with the growing scarcity of transplant organs, transplantation advocates have proposed, and societies have implemented, a variety of strategies to increase organ supply. The chapter reviews and evaluates several of these proposed strategies, including presumed consent to organ donation, financial incentives for organ donation, revision of neurologic criteria for the determination of death, abandonment of the “dead donor rule,” animal-to-human organ transplantation, and bioengineering of human organs.