ABSTRACT

Beginning in the early 1970s, the most elemental aspects of medicine–decisions on birth and death, on what lives were or were not worth living–became the center of public debate and controversy. Traditionally, the questions had been at the essence of bedside ethics, the exclusive preserve of doctors: they decided whether a newborn's deficits were so grave or an elderly patients prognosis so poor that he or she would be better off untreated. As in human experimentation, one again finds whistle-blowers and scandals, contentiousness and rancor, a deep mistrust among many physicians of inflexible rules that would interfere with their ability to make case-by-case decisions and a no less profound dissatisfaction among many laypeople with the exercise of medical discretion. In human experimentation, two parties were at odds–the researcher and the subject. In the neonatal unit, three parties interacted–the doctor, the parents, and the infant–and the shadow of the state loomed larger here than elsewhere.