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A sex police for adults with "mental retardation"? Comment on Spiecker and Steutel.

This article is a rebuttal of the claim by Spiecker and Steutel that sex between people with mild and moderate "mental retardation" is morally permissable only with the substitutive consent of caregivers. After a review of historical, empirical and practical considerations, an ethical analysis is undertaken which concludes that Spiecker and Steutel's arguments are deeply flawed and their proposed policy morally objectionable.

Adult↗

Reasoning in bioethics.

It is striking that some arguments in the bioethical literature seem implausible, counterintuitive, and even ridiculous when reported to competent moral agents. When examined, these arguments bear uncanny resemblances to the discourse of patients with debilitating mental disorders. I examine the kinds of irrationality involved, and discuss the fact that such irrationality is worrying in a discipline that purports to serve as a guide for real-life practical reasoning. I offer some thoughts about correctives that we might use to temper some of the odd opinions that bedevil our subject in the name of ethical analysis. It seems that one ought to be suspicious of neatly rational arguments that produce counterintuitive conclusions, but the alternative seems to be that we explore new constructions of old problems in Bioethics such that our discussion of them does justice to what we regard as of fundamental significance to our lives together as human beings.

Bioethics↗

Applied ethics for physician assistants. A schematic approach.

Ethical dilemmas in medical decision-making over the past ten years have assumed an unprecedented magnitude of importance. All members of the health care team--including physician assistants--have been drawn into the debate. This development has placed an obligation on PAs to develop skills of ethical analysis in order to make informed contributions. Ethical theory can furnish the basis for formulating a schema that can be used to solve ethical problems.

Ethics, Professional↗

Teaching old dogs new tricks: the role of analogies in bioethical analysis and argumentation concerning new technologies.

New medical technologies provide us with new possibilities in health care and health care research. Depending on their degree of novelty, they may as well present us with a whole range of unforeseen normative challenges. Partly, this is due to a lack of appropriate norms to perceive and handle new technologies. This article investigates our ways of establishing such norms. We argue that in this respect analogies have at least two normative functions: they inform both our understanding and our conduct. Furthermore, as these functions are intertwined and can blur moral debates, a functional investigation of analogies can be a fruitful part of ethical analysis. We argue that although analogies can be conservative; because they bring old concepts to bear upon new ones, there are at least three ways in which they can be creative. First, understandings of new technologies are quite different from the analogies that established them, and come to be analogies themselves. That is, the concepts may turn out to be quite different from the analogies that established them. Second, analogies transpose similarities from one area into another, where they previously had no bearing. Third, analogies tend to have a figurative function, bringing in something new and different from the content of the analogies. We use research-biobanking as a practical example in our investigations.

Bioethical Issues↗

Finding effective strategies for teaching ethics: a comparison trial of two interventions.

PURPOSE: To compare the effects of two teaching methods (written case analyses and written case analyses with group discussion) on students' recognition and assessment of common ethical dilemmas. METHOD: In 1999-2000, all third-year students at the University of Washington School of Medicine on a pediatrics clinical rotation participated in the study. Eighty students were based in Seattle and 66 were in community sites in a five-state area. All students received three scenarios with written instructions for ethical analysis, submitted written answers, and received written feedback from a single evaluator. The Seattle students also participated in an hour-long, one-time discussion group about the cases. All students submitted a final case analysis. Four components of the case analyses were evaluated: ability to identify ethical issues, see multiple viewpoints, formulate an action plan, and justify their actions. One investigator evaluated a masked subset of the case analyses from both groups to assess whether teaching method affected the students' ability to recognize and assess ethical problems. RESULTS: Forty-eight of 146 available case analysis sets (each set included three initial analyses plus one final analysis) were masked and coded. Performances on the initial analyses were similar in both groups (p >.2-.8). The discussion group had a higher absolute increase in total score (p =.017) and in ability to formulate a plan (p =.013) on the final case analysis. Performances otherwise remained largely similar. CONCLUSIONS: Students' recognition and assessment of ethical issues in pediatrics improves following a case-based exercise with structured feedback. Group discussion may optimize the learning experience and increase students' satisfaction.

Clinical Clerkship↗

Human tissue samples and ethics--attitudes of the general public in Sweden to biobank research.

PURPOSE: To survey the attitudes of the general public in Sweden to biobank research and to discuss the findings in the light of some well-known ethical principles. METHODS: A questionnaire was used to survey the opinions of the general public in Sweden, and an ethical analysis (using the principles of autonomy, non-maleficence, beneficence and justice) was performed to discuss the possible conditions of such research. FINDINGS: Between 3 and 9% answered that they did not want their samples to be collected and stored in a biobank. Many respondents required information about the purpose of the research and wanted to be able to consent or refuse. About one third of the respondents said they would have answered differently if financial gain was involved and those who commented indicated a more negative attitude. The principle of autonomy maintains that the right to self-determination should be respected, and the principles of non-maleficence and beneficence that the probable harms and benefits resulting from a particular project by using samples from a biobank should be balanced. The general public disagree about how these principles are to be balanced. INTERPRETATION: In the light of the findings different interpretations of the situation as well as possible alternatives are discussed in this paper.

Adult↗

The ethics committee in the nursing home. Results of a national survey.

As the complexity, prevalence and visibility of ethical dilemmas in medical care of the elderly have grown, hospitals and nursing homes have attempted to develop mechanisms for responding to these difficult ethical issues. While it is known that many hospitals rely on education and advice provided by an ethics committee, little data exist on the responses of nursing homes, despite the unique nature of ethical issues in a long-term care setting. The present paper reports findings from a national survey of administrators of 4504 nursing homes in which mechanisms for handling ethical dimensions in patient care were investigated. Results from 29% of respondents reveal that few nursing homes have established ethics committees (2% of the sample) and that committee formation appears positively associated with facility size and religious affiliation. Committees that have been formed engage in policy review (81%), advisory case review (67%) and education (45%). Few committees include patients or their representatives as members, and few have the authority to make binding decisions (26%). While the most effective response to ethical issues in medical decision-making is being debated, standing committees provide one means to contribute to the quality of decision-making by patients, their family members and their physicians. However, broader inclusion of patient perspectives and education of members regarding ethical analysis are necessary precursors to effective functioning of ethics committees in long-term care.

Ethics↗

Public health ethics: the voices of practitioners.

Public health ethics is emerging as a new field of inquiry, distinct not only from public health law, but also from traditional medical ethics and research ethics. Public health professional and scholarly attention is focusing on ways that ethical analysis and a new public health code of ethics can be a resource for health professionals working in the field. This article provides a preliminary exploration of the ethical issues faced by public health professionals in day-to-day practice and of the type of ethics education and support they believe may be helpful.

Data Collection↗

Project examining effectiveness in clinical ethics (PEECE): phase 1-- descriptive analysis of nine clinical ethics services.

OBJECTIVE: The field of clinical ethics is relatively new and expanding. Best practices in clinical ethics against which one can benchmark performance have not been clearly articulated. The first step in developing benchmarks of clinical ethics services is to identify and understand current practices. DESIGN AND SETTING: Using a retrospective case study approach, the structure, activities, and resources of nine clinical ethics services in a large metropolitan centre are described, compared, and contrasted. RESULTS: The data yielded a unique and detailed account of the nature and scope of clinical ethics services across a spectrum of facilities. General themes emerged in four areas-variability, visibility, accountability, and complexity. There was a high degree of variability in the structures, activities, and resources across the clinical ethics services. Increasing visibility was identified as a significant challenge within organisations and externally. Although each service had a formal system for maintaining accountability and measuring performance, differences in the type, frequency, and content of reporting impacted service delivery. One of the most salient findings was the complexity inherent in the provision of clinical ethics services, which requires of clinical ethicists a broad and varied skill set and knowledge base. Benchmarks including the average number of consults/ethicist per year and the hospital beds/ethicist ratio are presented. CONCLUSION: The findings will be of interest to clinical ethicists locally, nationally, and internationally as they provide a preliminary framework from which further benchmarking measures and best practices in clinical ethics can be identified, developed, and evaluated.

Benchmarking↗

Pricing human life.

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Cost-Benefit Analysis↗

Selective abortion for familial Alzheimer disease?

Advances in human genetics will soon allow prenatal diagnosis of genetic conditions in the fetus that range from trivial to devastating. This commentary explores the concept of severity in genetic diseases and decisions regarding selective abortion. Familial Alzheimer disease is used as a model for the analysis of ethical issues raised by prenatal diagnosis and the subsequent termination of pregnancy. The genetics of the disease has yet to be elucidated, but this condition may be amenable to prenatal diagnosis in the near future, at least in some families. Abortion is a choice open to women in the United States; however, it is still desirable to discuss on purely ethical grounds pregnancy termination in the case of late-onset but severe diseases.

Abortion, Eugenic↗

Pharmacogenetics: the bioethical problem of DNA investment banking.

Concern about the ethics of clinical drug trials research on patients and healthy volunteers has been the subject of significant ethical analysis and policy development--protocols are reviewed by Research Ethics Committees and subjects are protected by informed consent procedures. More recently attention has begun to be focused on DNA banking for clinical and pharmacogenetics research. It is, however, surprising how little attention has been paid to the commercial nature of such research, or the unique issues that present when subjects are asked to consent to the storage of biological samples. Our contention is that in the context of pharmacogenetic add-on studies to clinical drug trials, the doctrine of informed consent fails to cover the broader range of social and ethical issues. Applying a sociological perspective, we foreground issues of patient/subject participation or 'work', the ambiguity of research subject altruism, and the divided loyalties facing many physicians conducting clinical research. By demonstrating the complexity of patient and physician involvement in clinical drug trials, we argue for more comprehensive ethical review and oversight that moves beyond reliance on informed consent to incorporate understandings of the social, political and cultural elements that underpin the diversity of ethical issues arising in the research context.

Biological Specimen Banks↗

Law, ethics and epidemiology: the case of the cervical screening audit.

This paper provides a legal and ethical analysis of some controversial aspects of a recent proposal for an independent audit of New Zealand's National Cervical Screening Programme. The analysis reveals the difficulties likely to arise between investigators and ethics committees when the interests served by important public health research compete with the rigorous protection of patients' privacy.

Access to Information↗

Darren's case: narrative ethics in Perri Klass's Other Women's Children.

During the past fifteen years, the relationship between literature and medical ethics has evolved from the occasional use of stories as a substitute for the traditional case study in medical ethics to the emergence of a narrative approach to ethical analysis and decision making. Thus far, literary theory has been more important to narrative medical ethics than have works of literature themselves. Perri Klass's novel Other Women's Children deserves special scrutiny, however, because an analysis of it demonstrates ways that a narrative approach could enhance traditional philosophical and legal approaches to resolving ethical dilemmas in medicine.

Acquired Immunodeficiency Syndrome↗