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In April 1976, a group of eminent scientists, ethicists, and health systems experts met at Airlee house to discuss the role of the public in the governance of biomedical research. The meeting was jointly sponsored by Case Western Reserve University and the Institute of Society, Ethics, and the Life Sciences. The purpose of the conference was to explore what important issues remained to be studied in this important area and offer guidance to the Health Sub

committee and the Congress on future legislative activities. lo

We requested that this conference be convened as a follow-up to the Subcommittee hearings in the fall of

1975 on genetic engineering. Many important issues were
s! 1. raised at that hearing which needed further exploration in

an informal, non-legislative setting where ideas could be
expressed, exchanged, and critiqued more freely.

A report of the proceedings of that conference has been completed by the two sponsors and forwarded to the committee for our use. It is an excellent document and will be helpful to all parties interested in following the growing debate in the area of public governance and biomedical research. We request that this report be printed as a Committee on Labor and Public Welfare document so that it may be distributed to the public and serve as a basis for futher Subcommittee hearings.

Sincerey

ding

Jacob K. Javits,
Ranking Minority Member
Senaté Committee on
Labor and Public Welfare

Edward M. Kennedy, Chairman
Senate Health Subcommittee

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BIOMEDICAL RESEARCH AND THE PUBLIC

EDITED BY TABITHA M. POWLEDGE AND LESLIE DACH

A conference co-sponsored by the

INSTITUTE OF SOCIETY, ETHICS AND THE LIFE SCIENCES

Hastings-on-Hudson, New York

and

CASE WESTERN RESERVE UNIVERSITY

Cleveland, Ohio

Airlie House, Warrenton, Virginia, April 1-3, 1976

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INTRODUCTION This volume is the edited transcript of a conference on the relationship between biomedical research and the public. Co-sponsored by the Institute of Society, Ethics and the Life Sciences and Case Western Reserve University Medical School, the conference was made possible by a grant from the New York Foundation and took place from April 1 through 3, 1976, at Airlie House, a conference center near War

1 renton, Virginia.

On October 29, 1975, two members of the Senate Subcommittee on Health, Edward M. Kennedy (D.-Mass.), chairman, and Jacob K. Javits (R.-N.Y.), ranking minority member, wrote as follows to Willard Gaylin, M.D., President of the Institute:

The recent hearings before the Subcommittee on Health of the Committee on Labor and Public Welfare suggest a growing strain in the relationship between biomedical research scientists and the general public. As legislators who have long been concerned with national health problems, and particularly the support of basic biomedical research, we find disquieting both the tone and direction of some of the current discussion about the public role in the establishment of science policy.

On one hand, it seems to be well understood on all sides that biomedical research has made and will continue to make significant contributions in satisfying the health needs of the country. On the other hand, it seems equally well understood that the public, which provides a considerable portion of all biomedical research funds, has an important role to play in the allocation of these funds and in the formation of judgments on the potential benefits of research. Yet, these understandings seem to break down in practice. There are suggestions that the scientists may not appreciate adequately the public interest and its role in decision-making; and equally that the public may not adequately understand the scientist, his disciplines and approaches to problems, and the significance of what he does for society.

There is evident and increasing need for both sides to get together to discuss and define the issues in reasonable fashion and to identify mechanisms to educate one another. More than this, it becomes increasingly important to society that the serious problems which arise at the interface between science and society be carefully identified, and that mechanisms and models be devised for the solution of these problems.

Certainly, continuation of the present misunderstandings can only lead to increased polarization between Congress and the research community. There is already evidence of such strain. Perhaps as the relationship between science and the

1

public has evolved and changed in recent years, all parties have failed to understand both what is happening and what, ideally, ought to happen in the future.

We believe it might be useful if an interdisciplinary group of leaders in biomedical research could join with a group of nonscientists devoted to the public policy area to sit down quietly and privately and talk through some of these issues. We are confident that such a meeting could be fruitful in initiating such a dialogue, and, perhaps through the mechanism of treatment of specific cases, could begin to identify the nature of the problems which face us and the direction in which some solutions might be found.

Both the Hastings Institute of Society, Ethics and the Life Sciences, and Case

Western Reserve University Medical Center seem to be in a particularly advantageous position as groups concerned with various aspects of the interaction of science and society—to convene jointly a meeting to initiate such discussions.

We would very much appreciate hearing from you as to whether you would be willing to participate in such a joint undertaking. Please let us know when you believe the meeting should be held, and what specific items you feel should be discussed.

Also, please let us know how we might best assist you in arranging this endeavor. The conference was thus arranged at their request. The transcript has been condensed and edited for readability, and the last session, in which only about a third of the original group participated, has been summarized.

The editors are grateful for suggestions from Daniel Callahan, Willard Gaylin, and Peter Steinfels. They also thank Eva Mannheimer for her extensive help with the manuscript at every step, and Vickie Venne for her research assistance.

TABITHA M. POWLEDGE.

LESLIE DACH, HASTINGS-ON-HUDSON, N.Y., Autumn, 1976.

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