Communities are the chief source of philosophical sloppiness these days. Varying endlessly across the entire range of human experience, communities raise the specter of moral relativism that makes ethics sometimes seem a misguided and futile enterprise. Yet the language of communities and their multitude of norms, preferences, and principles present an opportunity, and challenge, to confront abiding moral problems in immeasurably richer and more novel ways. But neither the opportunities nor the challenges were always obvious. On the contrary, the origins of the Enlightenment coincide with an assault on the disharmony posed by restless and unruly communities.

The child was 2 years, 8 months old and weighed 25 pounds, one-fifth the weight of her mother, for whom she was to be the bone marrow donor. The mother had suffered a relapse of acute myelogenous leukemia; her physicians recommended a bone marrow transplant. The child was the closest human leukocyte antigen (HLA) match and thus the best donor candidate for her mother's transplant.

The first principle of the Nuremberg Code (1946) requires the informed consent of the subject. Proxy consent was not addressed until the Declaration of Helsinki (1964). U.S. policies regarding consent for the participation of children in research would not be finalized for almost two more decades (1983) in subpart D of the federal regulations that govern the participation of subjects in research. In October 2000, the Children's Health Act was passed. Title X required the Secretary of the Department of Health and Human Services (DHHS) to conduct a review of the regulations under subpart D and “to consider any modifications necessary to ensure the adequate and appropriate protection of children participating in research, and report the findings of the Secretary to Congress.” In this article, I provide a brief overview of the current informed consent requirements in pediatric research, which include requirements for parental permission and the child's assent. I then examine the moral bases for these requirements; whether the current policies are consistent with these moral foundations; and if not, how the policies ought to be modified.I would like to thank Walter Glannon, Ph.D., for reading an earlier version of this paper. The section of this paper entitled “Parental Permission” is based on an editorial: Ross LF. How many parents should be needed to consent to a child's participation in medical research? American Academy of Pediatrics, Section on Bioethics Newsletter May 2002:1, 4. Dr. Ross's research on children in research is funded by an NIH Grant (NLM 1 G13 LM07472-01).

The past year in bioethics in Australia has been relatively predictable. We continue to struggle with rising healthcare costs, though thankfully not on par with numerous other countries due to a relatively positive economic outlook. We are still fighting difficulties associated with higher medical indemnity costs, which have again caused many physicians to leave private practice, particularly in high-risk and specialty practice areas. In response, the federal government (following a shuffle of ministerial positions including that of the federal health minister) delayed the imposition of the medical indemnity levy for physicians until mid 2005. In May, the Australian Law Reform Commission and the Australian Health Ethics Commission issued their final joint report on genetic testing entitled “Essentially Yours” and endorsed use of genetic tests by insurance companies, despite the concerns of some geneticists and many members of the public about their scientific reliability. However, they also advocated the establishment of the Human Genetics Commission of Australia (HGCA) to oversee such uses of genetic tests in terms of both scientific and actuarial reliability, and debates continue over the implementation of this and a number of their other recommendations. And state governments continue to phase in smoking bans in public places, with most implementing full bans in enclosed restaurants and cafes and planning to require provision of nonsmoking areas in all pubs within the next year.Thanks to Fiona Mackenzie for research assistance.

In the past few years, a second phase of biomedical ethics in Japan has begun to surface with a succession of governmental guidelines and laws regulating biomedical technology. Although this rush of guidelines exemplifies a heightened awareness concerning ethical standards for healthcare research, it also invites several practical, political, and procedural problems.

Multiple groups, including the National Bioethics Advisory Commission, the American Society of Clinical Oncology (ASCO), the National Coalition of Comprehensive Cancer Centers (Personal communication with Robert B. Catalano, PharmD, Vice President for Regulatory Affairs, Coalition of National Cancer Cooperative Groups), Workgroup 6 of the Summit Series on Cancer, PRIM&R, the Bell Report, and prominent ethicists have called for replacing the current system of local institutional review with central review for multisite national trials. We argue that this need is particularly acute in pediatric oncology, as shown by the experience of the Children's Oncology Group (COG).

This article attempts to clarify the concept of disability by explaining the ways in which it has been applied, and defined, by both philosophers and disability scholars. Conceptual approaches to disability can be divided into two main categories: the individualistic and the social approaches. In the individualistic framework, disability is seen as an individual condition that results in a disadvantaged position regarding civic, economic, and personal flourishing. This is the dominant view of disability in bioethics. According to the social approaches, disability is seen as a result of the oppressive material arrangements in existing societies, or as a corollary of the prevailing cultural values, ideas, attitudes, and language that produce and shape human reality. I argue that disability is essentially a normative concept that reflects the idea of what kind of beings humans ought to be, or, how society ought to be constructed to treat its members equally. In other words, the essential core of the concept of disability is ethical, and this implies that ethical examination is needed to provide a fuller picture of disability as a physical, psychological, and social phenomenon.Thanks to Matti Häyry, Tuija Takala, and Tanja Vehkakoski for their useful comments. This paper was produced as a part of the project Genes, Information, and Business, financed in 2000–2003 by the Academy of Finland.

At the end of 1999 the Danish Council of Ethics published a report on organ and tissue donation from living donors. The report focused on kidney and bone marrow transplantations (BMTs), as these are presently the most common transplantations from live donors. During the work on the report, it became clear to the Council that, apart from problems concerning coercion and commercialization that affected both adult and child donors, by far the largest ethical problems occurred in donations from children.

One of the core issues in medical ethics has been and still is autonomy, people's right to make their own self-regarding choices in situations where more than one option is available. Depending on the case, these choices may be influenced by personal life history, one's ethical and other values, and one's future expectancies. A professional soccer player may risk an operation, which for a less athletic individual would represent an unnecessary risk that might jeopardize her ability to even walk. Saying no to painkillers may sound irrational to those who do not see anything ennobling in avoidable suffering, and preferring homeopathic medicine to more evidence-based medicine may lead others to seriously doubt the logic of one's thinking. But although these situations may be difficult,1 they seldom lead to an impasse. Even if serious value conflicts emerge in these patient–medical personnel encounters, they can be overcome by the fact that, in Western countries, honoring patients' autonomy has been widely accepted as part of medical professionalism.

My task is to provide some critical commentary on the preceding essays. My unfortunate conclusion will be that the issues that are their primary focus are more likely to become more ethically intractable over the next several years as medicine progresses. I do not see any easy or obvious way to avoid this conclusion.

This article focuses on healthcare ethics discussions in Estonia. We begin with an overview of the reform policies that the healthcare institutions have undergone since the region regained independence from the Soviet Union in 1991. The principles of distributing healthcare services and questions regarding just what ethical healthcare should look like have received abundant coverage in the national media. An example of this is the exceptionally public case of V—a woman with leukemia whose expensive drugs the national health insurance fund refused to compensate. In our subsequent discussion, we focus on a grand-scale local healthcare and research project—the Estonian Genome Project—that attempts to include 1 million DNA samples into one database.The following article has benefited from the participation in the projects “The Ethical, Legal and Social Aspects of Human Genetic Databases: A European Comparison,” financed between 2002 and 2004 by the European Commission's Fifth Framework Programme (#QLG6-CT-2001-00062), and “The Ethics of Genetic and Medical Information,” financed between 2002 and 2004 by the Nordic Academy for Advanced Study (NorFa). We gratefully acknowledge their support.

U.S. regulations do not afford consistent protections to human research subjects. One complaint is that they focus on federally sponsored research, with private research covered only if it falls under the jurisdiction of the Food and Drug Administration (FDA). This paper examines a deeper problem: Even when the regulations do apply, they still do not afford consistent standards of protection. The U.S. Common Rule and related FDA regulations lack a workable regulatory control mechanism.

These CQ Sources were compiled by Bette Anton.

The last two decades have witnessed intense debate over the ethical legitimacy of placebo controlled trials (PCTs). Most of the arguments for and against the use of PCTs turn on one of the following issues: (1) the compatibility of the obligations of clinicians and researchers with PCTs, (2) the scientific merit of PCTs, and (3) the influence of patients' and subjects' perceptions, ability to consent, expectations, and rights on the permissibility of PCTs. I introduce each of these categories and assess the principal arguments in each group. I argue that, although some of the arguments against PCTs have limitations, they do inform the debate in significant ways by pointing to important constraints on PCTs. Those concerning patients' and subjects' perceptions, capacity to consent, expectations, and rights are particularly instructive. They do not, for the most part, sustain an absolute prohibition of PCTs, but they do suggest types of PCTs that are inappropriate and they indicate issues that must be addressed when PCTs are conducted. I argue that we should look to the reasonableness and permissibility of informed refusals of care (1) to evaluate the extent to which a trial is a legitimate PCT (e.g., cases in which clinicians would be highly suspect of accepting informed refusals may be more problematic than PCTs in situations in which clinicians would be comfortable accepting informed refusals); (2) to determine which potential subjects should be considered eligible to enroll in a PCT (e.g., those who would not be permitted to refuse treatment generally might not be eligible to enroll in a PCT); and (3) to inform the language that should be used in describing the study as part of the informed consent process (e.g., prospective subjects should be asked if they are willing to forgo treatment and not enroll in the trial).

In Croatia, the subject of medical ethics, or bioethics, was introduced into the curriculum in the early 1990s at the medical schools of the University of Rijeka and the University of Zagreb. Today, bioethics education has become a basic part of undergraduate medical education not only in Rijeka and Zagreb but also in Osijek.

These CQ Sources were compiled by Bette Anton.

In this article I focus on two issues concerning bioethics in Argentina: reproductive health and ethics in research. Although these topics are quite dissimilar, they share a particular feature: their special relationship with context.

In a lively, interesting, and provocative paper Tuija Takala charges Julian Savulescu and me with bringing utilitarianism into disrepute and indeed with attempting to shoot it down, presumably in flames.1 Takala does not mince words. When she suggests that in our writings “utilitarianism is turning into the monster its critics always thought it was” (p. 447), she is associating herself with those who charge us (and others) with propounding, again her words, the “inhumane theory that allows the sacrifice of minorities, the killing of the innocent, and simplistic calculations on the value of life” (p. 447). Perhaps surprisingly for someone who identifies herself strongly with utilitarianism, Takala seems to take the worst and most ignorant critics of consequentialism generally, and of utilitarianism in particular, at face value and suggests that because their lazy, tendentious, and misdirected attacks on those they take to be utilitarians are often made against Savulescu and me that we somehow bear responsibility for this and for any charges they make, however ill judged or poorly supported by evidence.

Intersexual infants and infants with other genital abnormalities often receive genital surgery for sex assignment or for normalizing purposes. The wisdom and beneficence of these practices have been questioned by intersexual individuals, support groups, some doctors, and the media. Because the practices have been developed without long-term studies to evaluate them, pediatric urologists and parents of such children must face decisions with very little guidance from empirical support. In the face of ignorance about what is really the best medical response to intersexuality or genital abnormalities, some have argued for a moratorium on infant genital surgery until empirical studies are available. The urgent need for retrospective studies is now being recognized in medical journals. Because genital surgery may be appropriate and beneficent in some of these conditions, or in some degrees of these conditions, but not in others, retrospective studies must be devised to examine the degree of success of surgery for each of these conditions, or levels thereof.

The emerging phenomenon of genetic paternity testing shows how good science and useful social reform can run off the rails. Genetic paternity testing enables us to sort out, in a transparent and decisive way, the age-old but traditionally never-quite-answerable question of whether a child is genetically related to the husband of the child's mother. Given the impossibility of settling this question for certain, British and American law has long held that a biological relationship must almost always be assumed to exist. According to what is known as the “marital presumption” or “presumption of legitimacy,” a child born to a woman within a marital relationship is assumed to be the biological child of the woman's husband unless he was absent, impotent, or sterile. In other words, if paternity was not a physical impossibility for the husband, there was a nearly irrebuttable presumption that he was the father of the child. The husband was locked into the role of fatherhood.I am grateful to the participants of Genetic Ties and the Future of the Family, a research project run conjointly by The Hastings Center and the Institute for Bioethics, Health Policy, and Law at the University of Louisville School of Medicine. Discussions held in the course of this project have influenced this paper in various ways. I am especially grateful to Mary Anderlik for detailed comments. An earlier version of this paper was presented at the 2002 annual meeting of the American Society of Bioethics and Humanities and at a colloquium at Oxford University on Genetic Technologies and the Family, and the paper has benefited from comments offered on each of those occasions. Funding for Genetic Ties and the Future of the Family is provided by the National Institutes of Health (grant #HG02485).