A Final Note

Lessons From History: Looking to the Future

Toward these laudable ends, the government used patients, workers, soldiers, and others as experimental subjects. It acted through the experts to whom we regularly entrust the well-being of our country and our selves: elected officials, civil servants, generals, physicians, and medical researchers.

Moreover, the government acted with full knowledge that the use of individuals to serve the ends of government raises basic ethical questions. If, as we look back, there could be doubt about the importance of the matter to the leaders of the time, we need only look to the appearance before the U.S. Senate of David Lilienthal, who had been nominated to serve as the first chairman of the Atomic Energy Commission, the civilian successor to the Manhattan Project and the predecessor to today's Department of Energy. In his testimony, Lilienthal forcefully stated:

. . . all Government and private institutions must be designed to promote and protect and defend the integrity and the dignity of the individual. . . . Any forms of government . . . which make men means rather than ends in themselves . . . are contrary to this conception; and therefore I am deeply opposed to them. . . . The fundamental tenet of communism is that the state is an end in itself, and that therefore the powers which the state exercises over the individual are without any ethical standards to limit them. This I deeply disbelieve.[6]

What did happen when individuals were sometimes used as means to achieve national goals? How well were the national goals of preserving the peace and advancing medical science reconciled with the equally important end of respect for individual dignity and health? What rules were followed to protect people, and how well did they work? Was the public let in on the balancing of collective and individual interest? In what sense did the public, in general, and individuals, in particular, know what was happening and have the opportunity to provide their meaningful consent?

In this report we try to convey our understanding of how, when only good was sought, when its pursuit was entrusted to the experts on whom we most relied, and when missions were substantially accomplished, distrust, as well as accomplishment, remains.

We focus on the ways in which the government and its experts recognized the interest of individual dignity and sought to strike a balance with the national interests being pursued. We focus equally on the extent to which the public was privy to this balancing. In particular, we try to show how individuals' understanding and participation were limited by the conjunction of government secrecy and expert knowledge.

All Americans should experience immense satisfaction in the strides that have been made toward accomplishing both our national security and our medical research goals. However, as attested to by the many thousands of letters and calls that led to the Committee's creation, and the eloquent statements of the witnesses who appeared before us, this pride is diluted by a bitter aftertaste--distrust by many Americans of the federal government and those who served it.

The government has the power to create and keep secrets of immense importance to us all. Secret keeping is a part of life. Secret keeping by the government may be in the national interest. However, if government is to be trusted, it is important to know, at the very least, the basic rules of secrecy and to know that they are reasonable and that they are being followed.

Similarly, experts, by training and experience, have knowledge that individual people must, as a practical matter, rely on. However, legitimate questions arise when experts wear multiple hats or when they are relied on in areas beyond their expertise.

Where official secrecy is coupled with expert authority, and both are focused on a public that is not privy to secrets and does not speak the languages of experts, the potential for distrust is substantial.

In telling the story, and asking the questions, we have kept our eyes open for ways in which lost trust can be restored. It might be presumed that the past we report on here is so different from the present that it will be of little use in understanding research involving human subjects today. In fact, as we shall see, basic questions posed by the story of human radiation experiments conducted during the 1944-1974 period are no less relevant today. Then, as now, there were standards; the question is how they worked to protect individuals and the public. Then, as now, the ethical impulse was complexly alloyed with concerns for legal liability and public image. Then, as now, the most difficult questions often concerned the scope and practical meaning of ethical rules, rather than their necessity. The country has come to recognize, from its experience of the past half century, that tinkering with the regulations that govern publicly supported institutions, imposing ethical codes on experts, and altering the balance between secrecy and openness are important but not always sufficient means of reform. The most important element is a citizenry that understands the limits of these activities. That is why the purpose of this story is not simply to learn which changes to make in rules or policies that apply to government or professionals, but to begin to learn something more about how the Cold War world worked, as the most important means to making the world of tomorrow work better.