I'd like to say a few things about the quality of life of people like me. We can have – and now I do have – a good quality of life, but we still have to fight for it. We have to take back control of our lives from the KEEPERS, from the professionals.

Throughout the world, research ethics committees are relied on to prevent unethical research and protect research subjects. Given that reliance, the composition of committees and the manner in which decisions are arrived at by committee members is of critical importance. There have been Instances in which an inadequate review process has resulted in serious harm to research subjects. Deficient committee review was identified as one of the factors In a study in New Zealand which resulted in the suffering and death of many women diagnosed with carcinoma in situ.

A central concept in Dutch health law is the care of a good caregiver (de zorg van een goed hulpverlener). We find this standard in various (proposed) statutes and in legal doctrine. This concept is, however, vague and open and must be made more concrete in professional practice, in moral theory, and in law. In this article, we explore the implications of this complex standard and analyze what moral philosophy and jurisprudence can contribute to its clarification and implementation in professional practice and law. We start with some reflections on how practitioners see this norm and try to live up to it.

A basic assumption in current western medicine is that good healthcare involves informed choices. Indeed, making informed choices is not only viewed as “good practice” but a right to which each individual is entitled, a perspective only recently developed in the medical field.

Moreover, in the case of ethical decisions, much of the discussion on the role of the family is cast within the autonomy paradigm of contemporary bioethics; that is, family members provide emotional support but do not make decisions for the competent adult patient. The family Is uniformly viewed as an Important proxy decision maker for incompetent patients; but most bioethicists would eschew any decision-making role for the family of mentally competent adult patients. Underlying the discussion of autonomy is the basic assumption in western medicine that good healthcare Involves choices by Informed individuals.

I graduated from, medical school in 1972. According to orders signed at the Kremlin by the Chairman of the Supreme Soviet of the USSR, I was obliged, along with every graduating medical student, to swear to a new professional code, “The Oath of the Soviet Physicians.” This was the second year the oath was used. Incorporated in the oath were promises to “conduct all my actions according to the principles of the Communist morality, to always keep in mind … the high responsibility I have to my people and to the Soviet government” I felt no discomfort joining with my friends in repeating words about the communist morality which by that time had already become a ritualized and meaningless official decoration of our life. The text of this oath fit into the political and medical ideology of that time. Not surprisingly, “The Oath of the Soviet Physicians” died along with the Soviet Union.

There is significant evidence that the health needs of women and minorities have been neglected by a medical research community whose agendas and protocols tend to focus on more advantaged segments of society. In response, the National Institutes of Health (NIH) and Food and Drug Administration (FDA) in the United States have recently issued new policies aimed at increasing the utilization of women in clinical studies. As well, the U.S. Congress passed the NIH Revitalization Act of 1993, which specifically mandates increased inclusion of women and racial and ethnic groups in clinical studies. On the face of it, such gender and race-specific policies would appear to be morally problematic because traditionally ethics opposes the use of sex or race as legitimate criteria for distributions of benefits or burdens in social policies. Hence, these policies pose some significant moral questions. Feminist ethics provides us with a framework for evaluating such policies because of its readiness to recognize that socially and politically significant factors such as sex and race are morally relevant in setting public policy. Of course, feminist ethics does not simply endorse all appeals to sex and race but only the policies in which attention to such factors will contribute to social justice. In this essay, I Identify some of the Important ethical questions that a feminist ethics perspective raises about research policies devised to promote the Inclusion of women in clinical studies.

Perhaps the most troublesome medical decisionmaking cases facing state courts concern serious healthcare decisions involving patients with severe or profound retardation. The courts who face this issue encounter a difficult dilemma. A decision to terminate a medical treatment of a dependent, vulnerable person requires considerable solicitude. Allowing a helpless person to die sooner than is medically possible directly conflicts with that person's most basic right – the right to live. However, continuing treatment in the face of terminal illness may not only prolong but also increase intense mental and physical suffering. Perpetuating near torture in the name of protecting a person's life may be equally worrisome.

A recent message on one of the e-mail bulletin boards sent by a college student read, “I believe that the AIDS virus was developed in government labs for the purpose of controlling black folks.” In September 1990, Essence, an African American magazine with a circulation of 900,000, had as a lead article “AIDS: Is It Genocide?” In 1991, the New York Times quoted Clarence Page, African American columnist and Pulitzer prize winner: “You could call conspiracy theories about AIDS and drugs fringe ideas, but they seem, to have a large following among the black intelligentsia. … [And] you find it at all levels.” In April 1992, Lorene Gary explained in Newsweek “Why it's not just paranoia.” In that same month, another New York Times article reported: “Bizarre as it may seem to most people, many black Americans believe that AIDS and the health measures used against it are part of a conspiracy to wipe out the black race.”4 In February 1992, Science quoted Peter Breggin, director of the Center for the Study of Psychiatry in Bethesda, Maryland, as saying that research on violence “cloaks the intention to identify problem black children and then … prescribe pacifying drugs.”

The moral standing of involuntary sterilization has long been subject to debate but has only recently been looked upon with disfavor. When sterilization of a mentally handicapped minor is entertained, issues of eugenics, medical ethics, and legal precedent specially arise. Ethics consultants and ethics committees have been asked to consider such cases.

The culture of giving birth in Brazil has changed drastically since 1970. The caesarean section, once known as a life-saving medical procedure to be used under extraordinary circumstances, is now perceived by the medical profession and their female patients as a safe, painless, modern, and ideal form of birth for any pregnant woman. Brazil has the world's highest percentage of caesarean deliveries. The widespread use of C-sections has become a cultural phenomenon whose boundaries extend far beyond the medical arena. Medical practitioners have appropriated cultural values regarding the female body and sexuality, rein-forced a blind fascination with technology, and medicalized women's fear of labor to justify their preference for surgical births. By narrowing ethical concerns to the doctor-patient relationship and drawing on the notion of the patient's best Interest, physicians defend their practice as appropriate and even desirable.

It is often said that because physicians and other healthcare professionals frequently play a critical role in determining the fate of their patients, they ought if at all possible to be their patient's friend. The relationship of necessity is intimate: physicians have knowledge of their patients' histories and of their bodies which under other circumstances would be reserved to the most intimate of friends, and physicians and patients meet under more or less critical (or at least anxiety-producing) situations. In this paper, I briefly examine the role of the physician as “friend,” an Issue to be much more extensively explored In a book In preparation.

As research into Alzheimer's disease and other dementing disorders becomes more complex, risky, invasive, and commonplace, the need intensifies for discussion of the ethics of involving persons with dementia in research, specifically research of greater than minimal risk and of no expected direct benefit to the subject. (It is beyond the scope of this paper to consider the ethical issues related to research involvement of cognitively impaired children or children or adults with intermittent and/or reversible cognitive or psychiatric impairments. For such discussions, refer to the references in notes 1–6.) Reviewing such studies pushes our traditional analysis tools to their limits. Simply balancing and prioritizing the basic ethical principles of respect for persons, beneficence, and justice that serves us well in reviewing the vast majority of studies is inadequate when reviewing research of such ethical complexities as studies with marked risks and no expectation of direct benefit to subjects unable to consent or withdraw. Moving up to the level of theory, placing these principles within the commonly applied frameworks of consequentialism, deontology, or virtue ethics bring us no closer to reducing the tensions such research creates between upholding individual autonomy and advancing society's need to learn how to treat and cure these devastating diseases. What is needed is the introduction of more contemporary moral analyses. Specifically, we need to become more inclusive of the diversity of values perspectives of our general citizenry. In more theoretical terms, we ought to elevate to a more central role a communitarian perspective and a feminist ethics emphasis on relationships and context as we rush to keep in step, ethically, with this rapidly expanding area of medical inquiry.

On many occasions, care givers are faced with problems in which “drastic” types of treatment seem clearly inappropriate but “lesser” interventions still appear to be advisable, if not indeed mandatory. In the hospital setting, examples are frequent: the demented elderly patient, still very much capable of brief social interactions and still able to enjoy at least limited life, who although clearly not a candidate for coronary bypass surgery is, nevertheless, a patient in whom an intercurrent pneumonia deserves treatment; the severely retarded youngster in whom appendectomy seems clearly warranted but for whom long-term dialysis seems ill-advised. The examples are legion, and their variety defies an easy, stereotypical solution. Why, one may ask, is the treatment of intercurrent pneumonia or operating on an acute appendix “clearly indicated” while coronary bypass and long-term dialysis “clearly” are not? The reactions of care givers in the past have often consisted of attempts to give half-hearted treatment or to treat fully even against their better judgment. The lack of conceptual guidelines that might help sort out such problems has inevitably led either to an inflexible absolutism in which all possible treatment to sustain life or no treatment at all is given or has resulted in a pathetic attempt to act but act minimally (the “slow code” or to give what seems to be an ineffective dose of antimicrobials) with the hope that such actions will be ineffective.

In a research proposal recently submitted to one of the research ethics committees in Wales, children suffering from otitis media, or ‘glue ear’ as it is more familiarly known, were to be tested for allergic reactions to a number of substances using skin-prick tests. Small lancets would be used to pierce the skin of the forearm, allowing the penetration of traces of the allergenic reagent. The size of the subsequent inflamed area of skin would be measured. To demonstrate the expected correlation between glue ear and an allergic reaction, it would be necessary to see whether other children who did not suffer from glue ear also had the same reactions. If they did not, of course, then some causal association between the reaction and the disease condition could be inferred and investigated, with the hope of improving the treatment of the disease itself.

In April 1991, a general meeting of the Japanese Medical Conference (called ev 4 years) was held in Kyoto and attracted 32,500 participants, the largest number ever. The theme of the meeting was “Medicine and Health Care in Transition,” and the program Included panel discussions on “How to Promote the Quality of Health Care” and “How Terminal Care Should Be Provided” and symposia on “Diagnosis of Brain Death and Its Problems,” “The Propriety of Organ Transplantation,” and “Brain Death and Organ Transplantation.” These titles reveal not only how medical professionals in Japan perceive the present situatior healthcare but also the Issues that most concern them.

Philosophy, including moral philosophy, is the distillation of the spirit of an era. As society and science develop, sooner or later a given philosophy will gradually change form so that the resulting metamorphosis will better meet the needs of the society at that time. Traditional Chinese ethical thought is an outcome of the Chinese closed natural economy and ancient low-level science and is suitable for traditional Chinese medicine. Its superstable structure and character, which have evolved over more than 2,000 years, are rooted deeply in the minds of the Chinese people; hence, it is difficult for them to accept new bioethical views and to adapt to the developments of modern medicine and the changes in society. In China, owing to the strongly rooted values of the old tradition, the consequences of modern medicine have produced an alienating phenomenon that deviates from the goals of modern medicine and leads to conflicts between ethics and science, between old medical ethics and new medical ethics.

When patients join a Health Maintenance Organization (HMO), they choose a primary care physician from among a set whose members are approved by a board according to preestablished criteria. To assist patients in making their choice of physician, the HMO provides them an information packet about each physician.

Recently, a physician (let us call him Dr. Exchs) requested permission to include in the information packet about himself that he would not accept patients who smoke and would not continue the care of current patients who smoke. His poignant statement follows.

Over the past 15 years, ethics committees have become common within the acute care hospital setting. Their development within long-term care settings has evolved more slowly and has been confined primarily to nursing homes. In this paper, I describe the development of an ethics committee in a residential center for the mentally retarded and developmentally disabled (MR/DD). I describe how the committee has progressed and some of the ethical issues in this setting.

Medical research with children has been the subject of ongoing debate. The reason for controversy is clear. As with research on adults, one must strike a balance between two goals – promoting the health of children through advances in scientific knowledge and protecting child research subjects from exploitation and harm. However, because of their age and relative immaturity, children cannot protect their own interests as well as adult subjects can. Yet as they progress toward adulthood, increasing care must be taken to involve children in decisions that affect them, even to the extent of allowing them to make choices that may have serious and long-term consequences.