Dwelling on the Past: Illness, Transplantation and Families’ Responsibilities in Retrospect

Abstract

AbstractFrom family members’ perspectives, a bone marrow transplant is the source and the focus of many responsibility-related considerations. The chapter searches for connections between responsibility, memory and time, in order to explain the complex meanings of “retrospective responsibilities”. Story-telling within families and the emergence of family narratives is a place where responsibility is not just remembered, but also enacted. Families care about how things in the past are recounted in the present. One family case is discussed in detail, in which family members had to cope with the failure of multiple transplants and other therapies, and with the death of their daughter. The final part of the chapter considers problems of retrospective justification. With hindsight, what were the interests of the donor child? What were this young child’s will and duties? Can the anticipated retrospective consent of potential donor children serve as an orientation and an ethically reliable justification for the decision taken by the parents, as proxies, to allow a young child to become a donor? The chapter advocates the perspective of an ethics of care.