When the Cambridge (Massachusetts) City Council met on January 5, 1977, there were klieg lights, TV cameras, and scores of newspaper reporters. This was no ordinary meeting; it was when Dan Hayes would present the report of the Cambridge Experimentation Review Board – a citizens' panel charged with reviewing the risks of recombinant DNA research, of which he was chairman. Not only would the panel's report determine the future of genetic engineering at two of the world's leading universities, it would also reveal how well a group composed entirely of nonscientists had been able to deal with a complex and highly charged scientific controversy. Such a twist in science policymaking was as unprecedented as the research itself.

The citizens' panel had been appointed by the Cambridge city manager the previous summer, at the height of public alarm about potential hazards of the research. Its seven members were carefully chosen to be broadly representative but, in order to avoid “scientific elitism,” included no practicing scientists. Chairman Hayes ran an oil distribution company in North Cambridge, and the other members included a nurse, two physicians, a nun, a community activist, an engineer, and a professor of urban and environmental policy. Most of the members knew nothing at all about genetic engineering when they began meeting in August, so their sessions were a combination of inquiry and crash course in molecular biology.

All medical advances involve risks. Nothing ventured, nothing gained, as the saying goes. But that does not mean all risks are worth taking, or that we would all make the same choices. In at least two of the four case studies, DES and swine flu (and some might add the artificial heart), the risks were definitely not worth running, a judgment some observers made at the time. The periodic public controversies over genetic engineering also underscore the wide differences in people's responses to, and even definitions of, risks.

This chapter looks at how we view risks in general and the risks of medical innovation in particular. What makes some risks “acceptable” and others not? Why are patients, like most of those who took DES, often not told about the uncertainties and hazards of treatments? More broadly, what is or reasonably could be done to protect individuals and society against the potential dangers of new medical and scientific technologies? In the picture that emerges, the central problem appears to be the lack of concern about possible hazards on the part of those making decisions on the one hand, and the lack of communication of either dangers or doubts to those at risk on the other. These failures explain much about why the warnings of scientific and lay critics in the four cases had so little impact and why even predicted problems were not avoided.

Barney Clark expected that the operation would either kill him quickly or cure him. Unfortunately, he was wrong. He could not foresee his prolonged ordeal of dying. Nor did his doctors anticipate the incessant medical problems, tremendous cost, and troublesome ethical issues they would generate in their rush to the operating room. Moreover, most of all, the media reports did not convey to the average person how the landmark operation would change the nature of medical services for everyone.

When Dr. William DeVries exchanged Barney Clark's failing heart for a permanent artificial one, he initiated a sequence of events that will affect all patients. In time, the artificial heart program will have an indirect but certain influence on mechanisms and levels of medical insurance, the direction of medical research and the funding for it, the federal health care budget, and more. How all this works out will determine who gets what and how much medical care, how we apportion our expenditures between medical and nonmedical services, and whether individuals perceive the distribution of services as just.

When Private David Lewis, an Army recruit, reported for sick call at Fort Dix, New Jersey, in February 1976, complaining of mild, flulike symptoms, no one dreamed he would be dead within hours. Nor would anyone have imagined that his death would open an unprecedented episode in American public health: a federally funded campaign to immunize every man, woman, and child in the United States against a feared “killer” epidemic of swine flu.

At first the choice seemed clear: If the epidemic came, the nation would be protected; if it did not, the program would still have been a prudent investment. “Dollars for lives” became the byword of federal officials. Yet almost nothing seemed to go right. The program was mired in controversy from the outset and, beset with an unending string of problems, it fell farther and farther behind schedule. And the epidemic never came. Moreover, despite repeated assurance of safety, swine flu shots were later linked to Guillain—Barré syndrome, a paralyzing and sometimes fatal neurological condition. Over a decade later, lawsuits over alleged vaccine–induced injuries were still underway.

This book explores the social, ethical, and economic dilemmas society faces as a result of medical innovation, and the role of the general public in resolving them. It is the product of a multidisciplinary research project based at the Stanford University School of Medicine and funded by the National Science Foundation's Program in Ethics and Values in Science and Technology, with additional support from the Rockefeller Foundation.

Many aspects of the book and the project that produced it are, by conventional academic standards, rather unusual. First, the book is written for a general audience rather than for specialists, although we hope that specialists will also find in it new ideas and information. Its primary purpose is to communicate the central issues raised by medical and scientific innovation in a manner that is widely accessible, yet also accurate. We have therefore tried to keep specialized terminology to a minimum and to avoid the dry and often obscure style characteristic of much academic writing, without sacrificing scholarly standards of analytic rigor and documentation. We have also tried to bridge the sometimes considerable chasm between abstract intellectual theories and the practical concerns of policymakers and citizens.

Second, the book is broadly interdisciplinary in outlook. At one point or another, the project included faculty, staff, and students from medicine, history, political science, sociology, economics, philosophy, anthropology, education, regional planning, and law.