《CATASTROPHIC DISEASES：WHO DECIDES WHAT?》

Introduction1

PART I: FACTS AND VALUES5

Chapter One: Introduction to the Issues7

A. WHAT IS A CATASTROPHIC DISEASE?7

B. A MATTER OF NUMBERS AND CHANCE12

Chapter Two: Analytical Framework19

Chapter Three: The Role of Goals and Values23

A. PRESERVATION OF LIFE24

B. REDUCTION OF SUFFERING25

C. PERSONAL INTEGRITY AND DIGNITY26

D. EQUALITY27

E. PURSUIT OF KNOWLEDGE28

F. HIGH STANDARDS OF PROFESSIONALISM29

G. RATIONALITY30

H. ECONOMY31

I. PUBLIC INVOLVEMENT31

Chapter Four: The Development and Current Status of the Procedures35

A. HEMODIALYSIS35

B. KIDNEY TRANSPLANTATION39

C. HEART TRANSPLANTATION50

D. CONCLUSIONS ON FACTS AND VALUES53

PART II: DESCRIPTION OF PARTICIPANTS-AN INTERACTIONAL PORTRAIT55

Chapter Five: The Authority and Capacity of Physician-Investigators59

A. BACKGROUND CHARACTERISTICS OF PHYSICIAN-INVESTIGATORS60

B. MOTIVATIONS AND GOALS64

C. LIMITATIONS AND RESTRAINTS71

D. MORATORIA AND THE AUTHORITY OF PHYSICIAN-INVESTIGATORS75

Chapter Six: The Authority and Capacity of Patient-Subject79

A. THE "INFORMED CONSENT" MODEL79

B. THE SPECIAL PROBLEMS OF "CONSENT" FOR THE LEGALLY INCOMPETENT108

C. THE "INFORMED CONSENT MODEL" IN PERSPECTIVE113

Chapter Seven: The Authority and Capacity of Professional and Public Institutions117

A. PROFESSIONAL GROUPS118

B. PUBLIC BODIES129

C. QUASI-PUBLIC GROUPS144

PART III: STAGES OF DECISIONMAKING-PROPOSALS AND RECOMMENDATIONS153

Chapter Eight: The Formulation of Policy157

A. ANTICIPATING MEDICAL ADVANCES160

B. THE RELUCTANCE OF EXISTING INSTITUTIONS TO FORMULATE POLICY163

C. FORMULATING POLICY-WHO AND WHAT?166

D. CONCLUSION217

Chapter Nine: The Administration of Major Medical Interventions219

A. ADMINISTRATION AT THE LOCAL LEVEL-THE INSTITUTIONAL ADVISORY COMMITTEE222

B. ADMINISTRATION AT THE NATIONAL LEVEL235

Chapter Ten: Review of Decisions and Consequences239

A. REVIEW THROUGH THE EXAMINATION OF DATA240

B. REVIEW INVOLVING ADJUDICATION AND SANCTIONS246

C. CONCLUSION248