Spare Parts: Organ Replacement in American Society
Renee C. Fox and Judith P. Swazey. 254 pages. New York: Oxford University Press; 1992. $29.95.
The history of organ transplantation is, to a large extent, a history of technical success and ethical failure. Transplantation of solid organs has impelled the development of new immunosuppressive drugs and methods and impressive organ procurement mechanisms. We have also developed new laws: the Uniform Definition of Death Act, the Uniform Anatomical Gift Act, and the End Stage Renal Disease Act. Yet, ethics and law have always been peripheral to organ transplantation, and experimentation in this area continues to be characterized by superficial review by the institutional review board and failure to take informed consent seriously.
Fox and Swazey are the most knowledgeable and experienced analysts of the development of organ transplantation. Their previous study, The Courage to Fail, set the standard for studies of the social, ethical, and policy implications of medical research. This book continues their study of organ transplantation by concentrating on developments in the 1980s and early 1990s. The book is divided into two parts. The first describes how the nature of transplantation has evolved from a "gift relationship" to a repair shop "spare parts" model as human organs are viewed more and more as a market commodity.
The second, stronger part is a participant-observer case study of the experience with the Jarvik-7 artificial heart. The authors interviewed most of the major participants in the Jarvik-7 experiment in Utah and many of the participants at Louisville as well. They tell the inside story of this failed experiment better than it has ever been told before, adding significant details that have not previously been reported. More importantly, they place the quest for an artificial heart in the context of the U.S. experience, as another manifestation of the frontier mentality that prompts Americans to believe in limitless possibilities. They reveal incredible ethical deficiencies at the levels of researcher, institution, corporation, and the institutional review board. The ethical defects they observed were so serious that at one point the authors had to decide whether to end their own study and blow the whistle themselves. In what is at least a bit self-serving, they decided to continue their study and go public with both their report to their own funders (NSF and the National Heart, Lung, and Blood Institute) and this book.
Ultimately, the authors conclude that all of the attention and effort focused on transplantation is misplaced and detracts from the much more central problem of poverty and how to provide universal access to more basic and useful health care services. In their final chapter, the authors announce that they are leaving the field of transplantation. This is understandable, but I hope they will forgive me for believing that somewhere around the year 2000 we will see a book from them on transplantation in the 1990s, one that explains how the United States came to its senses and used the universal appeal of organ transplants to help mold support for a workable system of universal health care.