Temin, Howard M., McArdle Laboratory, University of Wisconsin, Madi- Page son, Wis., prepared statement__. 335 United Hospital Fund of New York, Kerr L. White, M.D., director, Insti- 88 Prepared statement_. Woodcock, Leonard, president, United Auto Workers, accompanied by ADDITIONAL INFORMATION 170 Articles, publications, et cetera: A Data Bank for Patient Care, Curricurlum, and Research in Family Looking At Research, by Douglas Black, London, England. Practice Profile, 14 working days between March 1, 1977 and March 26, The Public Governance of Science, by Donald S. Fredrickson, M.D_ "What Does a F. P. Do All Day?" (Top 20 Reasons Why Patients Con- Kennedy, Hon. Edward M., a U.S. Senator from the State of Massa- 239 144 103 309 142 218 305 315 314 211 69 OVERSIGHT OF BIOMEDICAL AND BEHAVIORAL RESEARCH IN THE UNITED STATES, 1977 THURSDAY, MARCH 31, 1977 U.S. SENATE, SUBCOMMITTEE ON HEALTH AND SCIENTIFIC RESEARCH Washington, D.C. The subcommittee met, pursuant to notice, at 9:30 a.m., in room 4232, Dirksen Senate Office Building, Senator Edward M. Kennedy (chairman of the subcommittee) presiding. Present: Senators Kennedy, Javits, and Schweiker. Committee staff present: David Blumenthal, M.D., professional staff member and Mary Frances Lowe, minority. OPENING STATEMENT OF SENATOR KENNEDY Senator KENNEDY. The subcommittee will come to order. Today the Subcommittee on Health and Scientific Research begins an extensive program of oversight hearings on the status of our biomedical and behavioral research effort. Our review of this public policy area will be far-reaching and penetrating. It is long overdue. In the 10 years since Congress last undertook this task, we have spent nearly $20 billion on biomedical research. During this decade, we enacted the National Cancer Act of 1971 and the National Heart, Blood Vessel, Lung and Blood Disease Act of 1972. We established national commissions on multiple sclerosis, on arithritis and related musculoskeletal diseases, and on diabetes. We undertook major research campaigns against sickle cell anemia, Cooley's anemia, and sudden infant death syndrome. We initiated programs to inquire into the mysteries of the aging. That is a prodigious list of congressional activity. It is now time to reflect and take stock. For several years now, thoughtful observers of our Federal health research effort have been raising troubling questions about its direction and purpose. With these questions in mind, this subcommittee created the President's Biomedical Research Panel in 1974 to make a comprehensive review of the status of our biomedical and behavioral research endeavor. That panel undertook an extensive, serious, and searching study, and reported to the subcommittee during hearings last June. As is so often the case with such panels, the results of their review helped focus the issues, but did not resolve them. Indeed, since the publication of the panel's report, the dialog over the effectiveness, vigor, and direction of our health research and development apparatus has grown more extensive and more heated. In my view, this is all to the good. It is my hope that the debate over whether our biomedical research dollar is buying what we want will spill beyond the walls of this hearing room into union halls, classrooms, board rooms, and living rooms. For too long, the lay public has assumed that deciding how its money should be spent in the area of health research was a matter for the experts to decide. I welcome the debate over recombinant DNA research. It is evidence that this may no longer be the case. I have no preconceptions about where this subcommittee's inquiry or the hoped-for public debate will take us in making policy in the research area. However, I can state clearly certain principles which will guide our hearings and will underlie any legislation which issues from them: 1. The public must be involved in making research decisions which affect their lives. 2. We in Government must make more explicit the priorities we are using in allocating research dollars to competing uses. 3. The research community must be accountable for public moneys and it must be able to demonstrate, within reason, that those moneys are directed at meeting real human needs. I have said repeatedly, and I will repeat today, that I have tremendous faith in the capacity of fundamental biomedical research to improve the health and welfare of the American people. Our willingness to continue funding basic research is not at issue here. It is a given. But I also believe that biomedical research, insofar as it makes use of public moneys, must remain accountable to the people. And in the long term, if we cannot at some level demonstrate to the average American the relevance of research, that enterprise and our health will suffer. The Congress must recognize that it, too, must give the American people a full accounting of how it makes decisions and sets priorities in biomedical research. Certainly we have not escaped criticism in this area. We have been accused by some of thinking too little and spending too much. It is claimed that we fund research into whatever is the fashion of the day. We are called, by some, the "disease-of-the-month" club. Our critics claim we force the National Institutes of Health to neglect basic research in favor of applied, or applied in favor of basic. It is said that we ride herd on NIH too closely, or that we give researchers too much freedom, that we have allowed them to become insulated, self-regulating and self-serving. Whatever the past record, today we begin to lay the groundwork for outlining clear and rational priorities in the future. We have with us today some eminent observers of our Nation's current health and future health needs. They will provide us with what can accurately be termed "A State of the Nation's Health Report." There can be, in my view, no better place to start a review of our record in biomedical research. For we must always keep in mind that the purpose of research is to improve the Nation's health, to meet the needs of its people, and to lessen their burden of illness. Our extensive hearings in the biomedical and behavioral research area will be divided roughly into four phases, We will ask first: What is the status of our war on dread disease? We will ask second: What are the research opportunities for making inroads against the Nation's killers and cripplers? Thirdly, we will examine the past record of biomedical and behavioral research institutions. Finally, we will consider legislation which, I hope will be reported out of the committee by May 15, 1978. Our first witness is Mrs. Dorothy Rice, Director, National Center for Health Statistics. We are delighted to have you here and look forward to your testimony. We have had an opportunity to review your statement and your charts, and I must say I find them absolutely fascinating and am looking forward to your interpreting them and elaborating on them and commenting on them. It is a story which the American people ought to understand more fully and certainly, we in the Congress should have been aware of what is really happening with the Nation's health. I think your charts and your comments will be very helpful. STATEMENT OF MRS. DOROTHY P. RICE, DIRECTOR, NATIONAL Mrs. RICE. Thank you, Senator. I am pleased to appear before your committee to present data on the health of the Nation. I have with me two colleagues: Dr. Jacob Feldman, Associate Director for Analysis, and Mr. John Patterson, Director of the Division of Vital Statistics of the National Center for Health Statistics. My presentation will necessarily be selective, but I will be happy to answer questions and to provide additional information. Decades of progress form the background for any discussion of current health status. As this country, and others, have completed successive stages in the long transformation from rural, agrarian to urban, technological societies, one set of diseases has displaced another in the forefront of health concerns. As the infectious diseases were brought under control in this country in the first decades of this century, the chronic diseases began to emerge as the major causes of death and disability. Almost 21 years were added to the average life expectancy between 1900 and 1950, and more of our people began to live long enough for the chronic diseases, commonly conditions of middle and old age, to develop. Senator KENNEDY. What do you mean by "chronic" disease? Mrs. RICE. These are the diseases of long continued duration. They usually afflict persons in the older ages. The term "chronic" is used to distinguish these long-term diseases from "acute" diseases, which are usually of short duration. It is with the years since 1950 that we will deal today. I will present both recent trends in mortality and in the causes of deaths and other measures of the burden that illness, disability, and death impose on our society. |