This issue is devoted to the delicate balance of a prominent, now-traditional principle of autonomy with other important values. Today it is a truism that autonomy must be balanced against paternalism. In fact, for most bioethicists, respecting autonomy has triumphed over paternalism as a primary moral duty in healthcare. Yet autonomy must also be weighed against other values such as professionalism, social interests, and of course, the good of the patient; thus our illustration from Paul Klee of a tightrope walker making his cautious way across the wire as he tries to maintain the perfect balance.

Special moral, regulatory, and scientific questions surround the inclusion of children in health-related research. These questions arise from a fundamental moral tension between the obligation to expose children to research participation to ensure that they share in the benefits that arise from it and the obligation to protect them from the harms associated with their inappropriate involvement in research. This tension is felt in the development of moral and regulatory frameworks for the protection of child research subjects and in the implementation and interpretation of these frameworks by institutional review boards (IRBs).

Alzheimer's disease and other forms of dementia are among the fastest growing health problems in America. Dementia incidence tends to increase with age, and the elderly are the fastest growing segment of the population. Medical and social sciences research on dementia involving demented patients is both ongoing and necessary. However, as noted in a report of the Office for Human Subjects Research, “while research with intellectually impaired people generates valuable … data, it also provides significant ethical challenges.

As one looks into the crystal ball concerning the future of medicine, what might be seen? One vision is of genetic testing being carried out by medical technicians and then, as a result of this analysis, patients will be given a diagnosis of what is wrong with them. Next, they will be given a list of courses of action based on the tests. (Again, this list could be obtained by a technician who merely transfers the test results to the accepted database.) Once the list is presented to the patient, then she will choose her treatment (with the help, perhaps, of some online tutorials). Then a clinician will inoculate her or otherwise administer the genetic therapy. The entire process might go forward without the intervention of a physician!

The patient's right to informed consent is grudgingly acknowledged by medical professionals, firmly established in law, and brandished as a shibboleth by most bioethicists. But questions remain concerning genuine patient autonomy, and the doctrine of informed consent offers inadequate answers. In addition to the continuing controversy over what counts as “informed,” the passive acquiescence implied by “consent” seems a pale shadow of genuine autonomy.

Unlike many philosophers who write on biomedical ethics, John Hardwig is not primarily concerned to test our intuitions about the limits of normative theories by thought experiments or problematic borderline cases. Rather, he presses us to accept the conclusions to which our most firmly held principles commit us. But these conclusions, if Hardwig is right, turn out to be quite startling claims about moral duty that would undermine much of contemporary bioethical theory regarding end-of-life decisions. On his view, we must face squarely the moral implications of our present arrangement of healthcare funding in the United States, where more and more of the financial responsibility of care is being shifted onto the families of patients, often with disastrous results. Yet, in the context of this increasingly unstable arrangement, our chief principle of medical decisionmaking also holds that their interests are not morally relevant at all in deciding what should be done for the patient, and only the patient's wishes count (insofar as we can determine them). Now Hardwig thinks that this rule is irrational in the present circumstances, and that it would make more sense to admit the moral relevance of the interests of family members, but also that if we do give appropriate weight to their concerns, we shall be led in some cases to the conclusion that the patient has a duty to die.

The principle of respect for autonomy is increasingly under siege as a valuable component of healthcare ethics. Its critics charge that it has been elevated to a position out of proportion to its contribution, so that the individual's wishes and rights have come to dominate healthcare decisionmaking, while obligations and responsibilities are ignored or devalued. If we are to salvage respect for autonomy we must find a way to reconnect the individual and the community, rights and responsibilities, in the way we think about, discuss, and make healthcare decisions.

The notion of “relational” autonomy—as described by feminist scholars such as Susan Sherwin and Anne Donchin—has been the subject of a significant body of literature over the last few years and has recently generated some interest within the field of bioethics. Although the focus of this interest has been the autonomy of ordinary moral agents, the analysis of relational autonomy can usefully be extended to apply to the autonomy of professionals, not only as individual moral agents, but in their roles as professionals as well. In this paper, I argue that professional autonomy, rightly understood, is relational in nature. This understanding of professional autonomy stands to improve our understanding of professional ethics, as well as providing a particular, concrete example of what we mean when we call autonomy “relational” and “socially embedded.

These CQ Sources were compiled by Judith Schaeffer Young.

A decision by the Supreme Court of California in the case Conservatorship of Wendland, issued in August 2001, forces us once again to confront the all-too-common situation in which an individual has, on multiple occasions, expressed strongly held personal convictions about life-sustaining interventions but failed to incorporate those convictions into a formal advance directive. Many courts have recognized that lay citizens do not consistently resort to written legal formalities in their day-to-day lives, and reasonable accommodation must be made to this fundamental fact about human nature. However, a small but apparently growing minority of courts adamantly insist on either formal written directives or prescience and prophetic precision on the part of the patient before a surrogate can direct the withdrawal of life-sustaining treatment. The chronology of cases that comprise this minority position in American medical jurisprudence raise important ethical issues.

In the following paper, Annemiek Richters of the University of Leiden in the Netherlands addresses the dilemmas faced by health professionals who are asked to evaluate and provide supporting documentation for those refugees who seek political asylum in the countries of Europe. It is in the politically charged arena of asylum applications, government regulations, and public policy where bioethics, human rights, and health converge. Despite the 1951 Convention on Refugees, a treaty signed by nations around the world to safeguard the rights of those who are displaced, and other treaties that protect the rights of vulnerable populations, refugee and asylum policies have become increasingly strict in an effort to deter those who would seek safety. This tightening of borders in the countries of the West challenges physicians who find themselves caught between obligations to treat, to advocate, and to challenge policies that make treatment a potentially dangerous proposition. Unfortunately, the World Trade Center attacks have exacerbated the problem by labeling asylees and refugees as potential terrorists and subject to deportation.

Mental health professionals who care for asylum seekers in Western European countries increasingly encounter problems for which standard diagnostic and therapeutic protocols and institutional healthcare policies offer no ready answers. In the following case vignettes some of these problems can be identified.

This section is meant to be a mutual effort. If you find an article you think should be abstracted in this section, do not be bashful—submit it for consideration to Kenneth V. Iserson care of CQ. If you do not like the editorial comments, this will igve you an opportunity to respond in the letters section. Your input is desired and anticipated.