Jay Katz has been a pioneer in exploring the ethics of human subjects research. We are all the more grateful because he has given us a map of the landmarks along the path of what he has called his personal odyssey. That intellectual journey, from the horrors of Auschwitz to the callous disregard of human rights in the Tuskegee syphilis study, can serve as a guide to us today as we attempt to measure and direct the impact of AIDS on the ethics and regulation of research.

Professor Katz's account of his odyssey begins with the sources of his concern. At Yale Law School in 1966, with his colleague Richard Donnelly, he began teaching what was probably the first semester-long seminar on human experimentation. In preparation he read for the first time the trial transcripts of the Nuremberg proccedings against the Nazi physicians. I had lost most of my cousins, aunts, and uncles in the Holocaust, he writes. How many of them, I wondered, had been condemned to participation in these experiments?

As a university administrator, I worry about the form and substance of undergraduate education and about ways to encourage interdisciplinary perspectives on problems in a research university dominated by particular specialized disciplines. I also continue to teach a seminar in Cornell's Biology & Society Program for undergraduates and to assist others in teaching a course called Medical Humanities for second-year medical students. In the course of these administrative and teaching activities, I find myself returning to Jay Katz's Experimentation with Human Beings —both as model for teaching and as a perspective for institutional learning and change —as a model for professional action.

Jay Katz's approach to research with human subjects provides an excellent framework for analyzing the nature of teaching not simply in professional or continuing education programs in law, medicine, or social work, but in undergraduate programs as well. In my view, changing the ways in which universities help students to learn at all levels can be analyzed through the process of reflection, action, and evaluation developed in Katz's seminal work on human experimentation and most recently expounded in his suggested reforms of professional medical education in The Silent World of Doctor and Patient. For Jay Katz, the scholar who guided me to the realization that teaching and administering within the university at all levels is essentially a problem in human research, I offer this tribute.

In The Silent World of Doctor and Patient, Jay Katz painted a portrait of medical practice in which physicians voices dominate and drown out others with at least equal and often superior claims to be heard. Many physicians today, however, complain that their voices are no longer sufficiently heard in the provision of medical care. Some are angry at this perceived turn of events; they see intrusions by unscrupulous lawyers, by unsympathetic judges and lay jurors, by greedy malpractice insurance companies and by ham-handed bureaucratic regulators. These angry physicians mimic Rodney Dangerfield's comic complaint that they don't get no respect. And many of these angry physicians regard the influential work of Jay Katz as part of their problem.

Another contemporary group of physicians evaluate Jay's work in a different mood. These physicians, typically younger members of the profession, are intrigued by Jay's analysis and often seem eager to implement it—to solicit patients informed consent, to invite (sensible) judicial or legislative regulation, to eschew the old model of the infallible father-physician.

Over the past decade we have witnessed a remarkable change in the courts, and presumably in societys, attitude toward the care of the terminally ill patient. In a series of court decisions, judges have consistently ruled that the terminally ill patient's autonomy must be respected, even if that means limiting the patient's care when that is the patient's wish. Moreover, courts have allowed the incompetent patient's family and doctors, when they agree, to make substituted decisions to limit care, that is, decisions which attempt to replicate the choices that the patient would have made about his own treatment were he able to do so. Courts have not, however, offered guidance on those situations in which the incompetent patient's family and physicians disagree with respect to their recommendations concerning the course of therapy the patient would choose. Most importantly, courts have failed to establish clear limits on professional authority in situations where disagreements occur.

More than 30 years have passed since the phrase informed consent was first uttered in a judicial opinion. Jay Katz's own ground-breaking work on informed consent is now more than 10 years old, and the insights of The Silent World of Doctor and Patient are so constantly fresh that it is easy to forget it too was not just recently published. While trying to develop some new thoughts about informed consent for this essay—a task made virtually impossible by Jay's work—I had reviewed an article by Professor Joseph Goldstein, one of Jay's frequent collaborators. Goldstein recounted discovering an index card he had written almost 30 years earlier (ironically for me, the year I was born) containing some notes about Harold Lasswell's work. Not only is law a seamless web, it is a timeless one.

Jay's work on informed consent is pervaded by a timeless theme that I wish to address here: how the dignity of the individual, the shining beacon of the idea of informed consent, is sorely neglected in the law of informed consent.

For a symposium in honor of Jay Katz, my teacher, advisor, friend, and ever-present source of help, it is an honor to be asked to write about disclosure and consent in pediatrics. From the time he began to think, write and teach about family law, Jay has advocated taking children and adolescents seriously. In our society such concern for their legal rights is unfortunately rare; the situation would be much worse were it not for Jay's writings and for his former students who have gone on to work for and with children. When he began to work in the areas of human subjects research and then informed consent, his concern for the rights of young people permeated this work as well.

Any lawyer in a gathering of health professionals, especially physicians, can expect to be bombarded by complaints about the law of professional liability and the high cost of malpractice insurance. It is well-established, of course, that the number of medical malpractice claims significantly increased in the 1960s, precipitating the first insurance crisis in the early 1970s, and leading to a wave of legislative reforms. Now, after a quiescent period, the number of claims filed and the cost of insurance are rising again, and the legislatures have responded with a new wave of reforms.

According to the American Medical Association's socio-economic monitoring system, the number of claims filed against physicians increased from an average annual rate of 3.2 per 100 physicians before 1981 to 8.2 from 1981-1984 and to 10.1 in 1985. The annual cost of insurance premiums, which had increased only by 4 percent per year from 1976 to 1982, increased by an annual average of 21.9 percent between 1983 and 1985. The cost of insurance represents about 4 percent of the gross revenues of the average self-employed physician.

I feel it a great honor to be invited to participate in the development of this festschrift for my old and dear friend, Jay Katz. We have shared the interdisciplinary trenches from the very beginning of our respective careers. We have struggled with some of the same problems; we have sometimes joined in teaching projects; there are several areas of law that we have both explored; and on one occasion we have even opposed each other as expert witnesses. Throughout the duration of these thirty-three years I have followed Jay's work closely, fully agreed with most of his principles, and often felt a twinge of envy that I had not written some of the papers which he did. Likewise, I have always felt greatly supported by Jay in my efforts, even though we have had minor disagreements from time to time and I shall discuss one of these later on. I seriously doubt that Jay's most recent works will turn out to be truly a valedictory. I anticipate the pleasure of continuing to read stimulating pieces by him in future years.

For ten years, starting in 1958, Jay Katz and I were each other's teachers and each other's students in a teaching and writing collaboration at the Yale Law School. What was the nature of the collaborative relationship that Jay the physician-psychiatrist-psychoanalyst-in-training and I, trained in law and political science, expected to establish? Were we making informed choices when we entered into, carried out and ended our collaboration? Did we recome and acknowledge to ourselves and to each other why we were doing what we did? In accord with Jay's prescriptions in The Silent World of Doctor and Patient—a monumental contribution to our thinking about another collaboration—did we seek to help each other understand the decisions we had reached?

A word, first, about the kind of collaboration described in this essay. In a fundamental sense all intellectual and scholarly work—even work in the creative arts—is collaborative. All who engage in these activities build on or respond to the work of others.

The doctrine of informed consent, introduced by the courts in 1957, is but one of many legally imposed duties to disclose to arise over the last several decades. In myriad areas of everyday life, including medical decision-making, the law has come to require that a person or entity with presumptively superior information as to risks, contents, or consequences take affirmative steps to disclose that information at the time another individual is faced with a decision for which it might prove pertinent.

Such disclosure requirements underscore the values of individual liberty and self-determination that are at the core of our rights-based legal system. Rather than directly and more paternalistically regulating citizen behavior by, for example, simply prohibiting a given riskcreating activity, the State takes the less intrusive step of mandating that the individual be provided information that might affect her behavior.

I think it is fair to say that there have been two overriding needs of the health care system in the United States for the past couple of decades. One of them is to provide an adequate minimal level of care for all, especially for the underinsured and for those who could be faced by catastrophic health care costs. That need points to an expansion of health care expenditures and to the creation of new programs and strategies. The second need is that of finding a permanent and effective way of controlling the constant escalation of health care costs, and of the proportion of health care costs in our overall economy. That need points to restraint and limitations, not constant expansion.

We are left, then, with two apparently contradiaory needs, each pointing to a major problem, but each standing, it would seem, directly in the path of the other.

Over the years, Jay Katz has consistently emphasized the need to consider both the psychodynamic factors and more general societal forces that play a role in shaping the way individuals and society respond to patients. In their 1975 book on catastrophic diseases, Katz and Capron addressed the central question of who should have the authority to make the decisions affecting those afflicted with catastrophic diseases: a theme that appears repeatedly in the insightful writing of Katz. In The Silent World of Doctor and Patient he presents a compelling case that patients’ deasion-making is an idea alien to the ethos of medicine. He has argued frequently for the importance of patient autonomy and has showed us how important conscious, as well as unconscious, and rational, as well as irrational forces are in shaping our actions.

In his work, Dr. Katz writes primarily about how physicians and patients should interact to arrive at decisions about research and treatment. These issues are certainly salient when considering the way acquired immunodeficiency syndrome (AIDS) should be treated and how we should evaluate new therapies.