The ideal of universal human rights is arguably the most potent moral concept marking the modern world. Its accelerated fruition in the last half of the twentieth century has created a powerful political force, laying the groundwork for future generations to extend and apply. Whereas anything resembling international legal status for human rights had to wait for the post-Nazi era, the bold proclamations of the Universal Declaration of Human Rights (UDHR, 1948) loosened a revolutionary force with endless potential for application to the full range of human endeavors. The roots of this movement can be traced to each and every era in which the vulnerable and powerless sought justification to oppose arbitrary domination. Its roots are, therefore, deep and wide.

The first reported successful kidney transplantation occurred in 1954, between twins. Since then, organ donation and transplantation has become less a medical marvel than a common expectation of patients with a variety of diseases resulting in organ failure. Those expectations have caused demand for organs to skyrocket far beyond available supply, fueling an organ shortage and resulting in over 60,000 patients on transplant waiting lists. In this special issue, our contributors attempt to shed new light on some of the many old ethical questions raised by transplant in the contemporary context of extreme scarcity.

Itself a topic of constant comment, the Internet's implications for healthcare remain unclear even while its boundaries incessantly expand. The WorldWide Web and allied technologies such as telephony are clearly permanent fixtures of our world. These technologies have changed our ways of life and demonstrate further dynamic capacities to do so. They speak of what we shall be, but know not.

In his book, Illness and Culture in the Postmodern Age (University of California Press, 1998), David B. Morris offers a biocultural model in which illness, with its biological and cultural components, always stands at the crossroads of both biology and culture. Given Morris's point that illness is a biocultural construct, it follows that individual and institutional decisionmaking in healthcare also involve a biocultural construct that experience suggests is too often overlooked, to the detriment of all decisionmakers. In the following Special Section, “Culture, Health, and Bioethics,” the authors explore the importance of understanding the cultural processes and concomitant challenges that necessarily play a crucial role as patients, providers, and policymakers grapple with healthcare decisions.

Organ allocation policy involves a mixture of ethical, scientific, medical, legal, and political factors, among others. It is thus hard, and perhaps even impossible, to identify and fully separate ethical considerations from all these other factors. Yet I will focus primarily on the ethical considerations embedded in the current debate in the United States about organ allocation policy. I will argue that it is important to put patients first—in the language of the title of one of the major public hearings—but even then significant ethical questions will remain about exactly how to put patients first.

This issue of the Cambridge Quarterly is dedicated to the memory of Jonathan Mann. He was an inspired leader in the global struggle against AIDS and a creative intelligence envisioning the integration of the goals of medicine, public health, and human rights. In a memorable keynote address to the Third World Congress of Bioethics held in San Francisco in 1996, he challenged this community to bring its expertise to contribute to a broader, more social, and more global conception of healthcare than is common to our thinking. Jonathan's tragic death in the crash of Swissair Flight 111 in September 1998 took from us a beacon of insight and an active collaborator in this exciting prospect. His vision of justice and of the essential integration of the sciences of humanity has inspired this collection of essays.

We offer it to his memory in gratitude and admiration.

As early as 1981 Gorlin and Zucker produced a film, A Complicating Factor: Doctors' Feelings as a Factor in Medical Care and in a 1983 paper on the subject they described one of the important epiphenomena of the encounter between doctor and patient—namely, the reaction of the physician to the patient and how this affects both the physician and the quality of the relationship. At that time they were concerned with the physicians' ability to reckon with their own reactions to patients who presented with problems or personality traits that complicated the doctor-patient relationship. Some patients were hateful or unlikable, some denied their disease state, some became unusually dependent on the physician, some were intimidating to the doctor. Their behavior evoked responses that tended to complicate the doctor-patient relationship with distancing, unusual identification, or hostility. That publication recognized and explained the problem and went on to suggest a process of achieving emotional awareness and mastery to help physicians maintain their appropriate role.

Recently, when I was diagnosed with an incurable and terminal bone marrow disease, I was dismayed to hear my doctor tell me that there were only three treatments available, two of which were unavailable to me because of my already frail condition. Furthermore, only 15% of patients responded at all to the third treatment, which would not cure but only impede the development of the disease. My response was to verify this information by going to the World Wide Web, and to my delight I found some 20 other treatments (albeit experimental) that my doctor had not mentioned. My experience typifies one of the significant advantages to patients arising out of the development of Internet medicine, and particularly of web sites devoted to health issues: Information previously parceled out by one's doctor is now easily available to anyone with access to a computer.

Medical advances in transplantation techniques have driven an exponential increase in the demand for transplantable organs. Unfortunately, policy efforts to bolster the organ supply have been less than effective, failing to provide a stopgap for ever-increasing numbers of patients who await organ transplantation. The number of registrations on waiting lists exceeded 65,245 in early 1999, a 325% increase over the 20,000 that existed 11 years earlier in 1988. Regrettably, more than 4,000 patients die each year while awaiting transplantation.

Jonathan Mann was a pioneer in establishing communication between the world of public health and that of human rights activism. At the very start, he strongly believed that although each of these two fields was in the midst of separate paradigm shifts, these shifts are essential, perhaps causal, to the combined health and human rights movement.

In the rapidly evolving healthcare environment, perhaps no role is in greater flux and redefinition than that of the clinical bioethicist. The discussion of ethics consultation in the bioethics literature has moved from an ambiguous concern regarding its proper place in the clinical milieu to the more provocative question of which methods and theories should best characterize the intellectual and practical work it claims to do. The American Society for Bioethics and Humanities addressed these concerns in its 1998 report, Core Competencies for Health Care Ethics Consultation. The report tries to answer the question as to what disciplinary training, background experience, and levels of knowledge in ethics the clinical ethics consultant should have, and what specific skills and character traits the clinical ethics consultant should cultivate. In addition to acquiring knowledge of common bioethical issues, theoretical concepts in ethical theory and moral reasoning, and health-related law and policy, the report also recommends that ethics consultants demonstrate knowledge of the health beliefs and perspectives of patients and healthcare providers. In our opinion, this recommendation underscores a crucial aspect of the practice of ethics consultation in the increasingly multicultural settings of healthcare institutions. Clearly, the dynamic of American life and culture is permeated with diversity and variety as new groups suffuse their own beliefs and faith perspectives into the health sector. New immigrant groups force society to question traditional healthcare practices and to accommodate changing medical needs.

Bioethics and human rights were conceived in the aftermath of the Holocaust, when moral outrage reenergized the outmoded concepts of “medical ethics” and “natural rights,” renaming them “bioethics,” and “human rights” to give them new purpose. Originally, the principles of bioethics were a means for protecting human rights, but through a historical accident, bioethical principles came to be considered as fundamental. In this paper I reflect on the parallel development and accidental divorce of bioethics and human rights to urge their reconciliation.

In the past decade, digital technology, fiber optics, cellular phones, satellite television, home computers, and the Internet have substantially transformed business, education, and leisure practices. These technologies are becoming so integrated into our daily routines that their ubiquity often goes unnoticed. We are, nonetheless, in the midst of a telecommunications revolution, and the healthcare industry is becoming a major player. The burgeoning field of home-based telemedicine is evidence of this.

Bioethics has entered a new era: as many commentators have noted, the familiar mantra of autonomy, beneficence, nonmaleficence, and justice has proven to be an overly simplistic framework for understanding problems that arise in modern medicine, particularly at the intersection of public policy and individual preferences. A tradition of liberal pluralism grounds respect for individual preferences and affirmation of competing conceptions of the good. But we struggle to maintain (or at times explicitly reject) this tradition in the face of individual preferences that we find distasteful, suspect, or even repugnant, especially where the broader social good or respect for equality is at stake. Directed donation presents us with such a dilemma: can we uphold the right of self-determination through respect of individual preferences regarding disposition of transplantable organs while at the same time maintaining an allocation system that reflects values of equity and justice claimed to underlie the socially negotiated practice of transplantation? Or are some preferences simply to be deemed unethical and not respected, even if that leads to a reduction in the number of transplantable organs available and to an apparent disregard for the autonomous decisions of the recently deceased?

In late December 1998, Renada Daniel-Patterson's father offered to donate a kidney to his daughter and ignited a controversy in the bioethics community. Renada had been born with only one kidney, which began to fail early in her childhood. At age 6, Renada had to receive dialysis three times a week. She was unable to attend school or venture very far from home. This pattern continued until Renada was 13, when Mr. Patterson called from prison to offer her his kidney. Renada was surprised to hear from her father, who was serving 12 years at California State Prison for burglary and drug convictions. Mr. Patterson was determined to be a compatible donor, and the family proceeded with the transplant operation. As a result of this surgery, Renada was able to live the life of a healthy girl for 2 years. Because the medication to prevent rejection of the transplanted organ made her feel ill and bloated and caused her to develop a hump on her back, Renada gradually began to skip doses. As a result, her donated kidney began to fail. It was under these circumstances that David Patterson offered to donate his second kidney to his daughter in 1998.

Bioethicists have become very interested in the importance of social groups. This interest has spawned a growing literature on the role of the family and the place of culture in medical decisionmaking. These ethicists often argue that much of medical ethics suffers from the individualistic bias of the dominant culture and political tradition of the United States. As a result, the doctrine of informed consent has come under some scrutiny. It is believed that therein lies the source of the problem because the doctrine incorporates the assumptions of the larger society. Thus, informed consent has been reexamined, reinterpreted, and even abandoned as unworkable.

During a prostate exam, Mr. Watson, age 65, learns that his prostate appears to be abnormal. The family physician conducting the exam, Dr. Kleinman, informs Mr. Watson that he may have prostate cancer. Mr. Watson agrees to a variety of tests, including blood tests, bone scans, ultrasound scanning, and a biopsy. After learning about this possible diagnosis and these tests, Mr. Watson surfs the Web for information about prostate cancer and gathers data from many different sources, including the National Cancer Society, the National Institutes of Health, Johns Hopkins University, the Mayo Clinic, and “alternative” medicine sites. He also searches for information from medical journals using MEDLINE, visits several chat rooms on prostate cancer, and joins some e-mail lists. He arrives in Dr. Kleinman's office for a follow-up appointment with a stack of material and many questions. Dr. Kleinman is surprised, irritated, and offended. He recommends that Mr. Watson have a prostatectomy followed by radiation, but Mr. Watson does not want this operation. He would rather receive a form of radiation therapy recently approved by the FDA that he learned about through his own research. Dr. Kleinman admits that he does not know much about this new treatment, but he says that he would read up on it and consult an oncologist.

Globalization is often discussed as if it were a recent phenomenon relating primarily to the development of world financial markets and improvements in information and travel technologies. But globalization is an ancient process, beginning with mercantile and cultural exchanges and facilitated by advances in transportation. In the twentieth century, the results of globalization can be seen in the rise of global capitalism and in the construction of a global economy. Most recently, the process of globalization has moved beyond the world of finance, however, into areas still traditionally thought of as national concerns, such as culture and healthcare. It is no surprise, therefore, that increasingly the challenges the United States is confronting in healthcare, biotechnology, and the environment are simultaneously faced by the international community as a whole. In the wake of the HIV pandemic, growing environmental consciousness, and a series of sensational advances in biotechnology, there is a dawning realization that problems such as improving public health, regulating advances in biotechnology, and achieving sustainable environmental development transcend national borders. In other words, bioethics concerns are global in nature.