This paper explores the relevance of the debate about ethical expertise for the practice of clinical ethics. We present definitions, explain three theories of ethical expertise, and identify arguments that have been brought up to either support the concept of ethical expertise or call it into question. Finally, we discuss four theses: the debate is relevant for the practice of clinical ethics in that it (1) improves and specifies clinical ethicists' perception of their expertise; (2) contributes to improving the perception (...) of moral competence of non-ethicists; (3) gives insight into complementary styles of argumentation of ethicists and non-ethicists; and (4) contributes to the awareness of the problem of profession-building of (clinical) ethicists. (shrink)
This paper explores the role of ‘community’ in the context of global bioethics. With the present globalization of bioethics, new and interesting references are made to this concept. Some are familiar, for example, community consent. This article argues that the principle of informed consent is too individual-oriented and that in other cultures, consent can be community-based. Other references to ‘community’ are related to the novel principle of benefit sharing in the context of bioprospecting. The application of this principle necessarily requires (...) the identification and construction of communities. On the global level there are also new uses of the concept of community as ‘global community.’ Three uses are distinguished: (1) a diachronic use, including past, present, and future generations, (2) a synchronic ecological use, including nonhuman species, and (3) a synchronic planetary use, including all human beings worldwide. Although there is a tension between the communitarian perspective and the idea of global community, this article argues that the third use can broaden communitarianism. The current development towards cosmopolitanism is creating a new global community that represents humanity as a whole, enabling identification of world citizens and evoking a sense of global solidarity and responsibility. The emergence of global bioethics today demonstrates this development. (shrink)
Telling the truth is one of the most respected virtues in medical history and one of the most emphasized in the code of medical ethics. Health care providers are frequently confronted with the dilemma as to whether or not to tell the truth. This dilemma deepens when both choices are critically vicious: The choice is no longer between “right and right” or “right and wrong,” it is between “wrong and wrong.” In the case presented and discussed in this paper, a (...) research team in Saudi Arabia unintentionally uncovered information regarding misattributed paternity. In such a situation and in the context of a tribal cultural system, what should the team do with this information? This case analysis demonstrates the joint application of ethical resources originating from within and outside the Saudi Arabian context. The article analyses the case based on the moral problems involved, relevant medical application, and the impact of such information in the Saudi tribal and Islamic domains. The most pertinent relevant values and secular debates on similar matters are discussed. Finally, the article aims to provide an Islamic dimension of family, fatherhood, and adultery. (shrink)
Vulnerability has become a popular though controversial topic in bioethics, notably since 2000. As a result, a common body of knowledge has emerged distinguishing between different types of vulnerability, criticizing the categorization of populations as vulnerable, and questioning the practical implications. It is argued that two perspectives on vulnerability, i.e., the philosophical and political, pose challenges to contemporary bioethics discourse: they re-examine the significance of human agency, the primacy of the individual person, and the negativity of vulnerability. As a phenomenon (...) of globalization, vulnerability can only be properly addressed in a global bioethics that takes the social dimension of human existence seriously. (shrink)
The main object of criticism of present-day medical ethics is the standard view of the relationship between theory and practice. Medical ethics is more than the application of moral theories and principles, and health care is more than the domain of application of moral theories. Moral theories and principles are necessarily abstract, and therefore fail to take account of the sometimes idiosyncratic reality of clinical work and the actual experiences of practitioners. Suggestions to remedy the illnesses of contemporary medical ethics (...) focus on re-establishing the connection between the internal and external morality of medicine. This article discusses the question how to develop a theoretical perspective on medical ethical issues that connects philosophical reflection with the everyday realities of medical practice. Four steps in a comprehensive approach of medical ethics research are distinguished: (1) examine health care contexts in order to obtain a better understanding of the internal morality of these practices; this requires empirical research; (2) analyze and interpret the external morality governing health care practices; sociological study of prevalent values, norms, and attitudes concerning medical-ethical issues is required; (3) creation of new theoretical perspectives on health care practices; Jensen's theory of healthcare practices will be useful here; (4) develop a new conception of bioethics that illuminates and clarifies the complex interaction between the internal and external morality of health care practices. Hermeneutical ethics can be helpful for integrating the experiences disclosed in the empirical ethical studies, as well as utilizing the insights gained from describing the value-contexts of health care practices. For a critical and normative perspective, hermeneutical ethics has to examine and explain the moral experiences uncovered, in order to understand what they tell us. (shrink)
The concept of âgeneticizationâ has been introduced in the scholarly literature to describe the various interlocking and imperceptible mechanisms of interaction between medicine, genetics, society and culture. It is argued that Western culture currently is deeply involved in a process of geneticization. This process implies a redefinition of individuals in terms of DNA codes, a new language to describe and interpret human life and behavior in a genomic vocabulary of codes, blueprints, traits, dispositions, genetic mapping, and a gentechnological approach to (...) disease, health and the body. This article analyses the thesis of âgeneticizationâ. Explaining the implications of the thesis, and discussing the critical refutations, it is argued that âgeneticizationâ primarily is a heuristic tool that can help to re-focus the moral debate on the implications of new genetic knowledge towards interpersonal relations, the power of medicine, the cultural context and social constraints, rather than emphasizing issues as personal autonomy and individual rights. (shrink)
This reply to Giles Scofield's critique of the authors' article in the June 2008 issue of the Kennedy Institute of Ethics Journal highlights two main topics. First, contrary to what Scofield suggests, using the terms "ethics" and "morality" interchangeably constitutes an oversimplification that blurs important distinctions. Second, in a representative democracy, ethical expertise and consultation need not generate a "tragic choice" of the kind Scofield has in mind.
UNESCO is an intergovernmental organization with 193 Member States. It is concerned with a broad range of issues regarding education, science and culture. It is the only UN organisation with a mandate in science. Since 1993 it is addressing ethics of science and technology, with special emphasis on bioethics. One major objective of the ethics programme is the development of international normative standards. This is particularly important since many Member States only have a limited infrastructure in bioethics, lacking expertise, educational (...) programs, bioethics committees and legal frameworks. UNESCO has recently adopted the Universal Declaration on Bioethics and Human Rights. The focus of current activities is now on implementation of this Declaration. Three activities are discussed that aim at improving and reinforcing the ethics infrastructure in relation to science and technology: the Global Ethics Observatory, the Ethics Education Programme and the Assisting Bioethics Committees project. (shrink)
Interactive technology assessment (iTA) provides an answer to the ethical problem of normative bias in evaluation research. This normative bias develops when relevant perspectives on the evaluand (the thing being evaluated) are neglected. In iTA this bias is overcome by incorporating different perspectives into the assessment. As a consequence, justification of decisions based on the assessment is provided by stakeholders having achieved agreement. In this article, agreement is identified with wide reflective equilibrium to show that it indeed has the potential (...) of justifying decisions. We work out several conditions for this agreement to be achievable and just. (shrink)
The Dutch system of obstetric care is often recommended for midwife-attended births, the high number of home deliveries, and the low rate of intervention during pregnancy and labour. In this contribution, the question is addressed whether processes of medicalization can be demonstrated in the Dutch midwife practice. Medicalization of pregnancy and childbirth is often criticized because it creates dependency on the medical system and infringement of the autonomy of pregnant women. It is concluded that medicalization is present in the practice (...) of Dutch independent midwives, however it is less clear and outspoken than in hospital policies. (shrink)
Geneticization is a broad term referring to several related processes such as a spreading tendency to use a genetic model of disease explanation, a growing influence of genetics in medical practice, and the slow changing of individual and societal attitudes towards reproduction, prevention and control of disease. These processes can be demonstrated in medical literature on preventive genetic screening and counselling programs for β-thalassaemia in Cyprus, the United Kingdom and Canada. The preventive possibilities of the new genetic and diagnostic technologies (...) have been quickly understood and advocated by health professionals, and their educational strategies have created a web of social control, in marked contrast to the alleged voluntary decision-making process and free choice. Genetic diagnostic technologies have led to considerable changes in control and management of β-thalassaemia, and have generated a number of unresolved incongruities. (shrink)
Solidarity belongs to the basic principles of Catholic Social Teaching (CST) and is part of the ethical repertoire of European moral traditions and European healthcare systems. This paper discusses how leaders of Catholic healthcare organizations (HCOs) can understand their institutional moral responsibility with regard to the preservation of solidarity. In dealing with this question, we make use of Taylor's philosophy of modern culture. We first argue that, just as all HCOs, Catholic ones also can embody and strengthen solidarity by just (...) doing their quintessential job, that is, to care for people with ill health. Second, we focus on the Catholic identity of these organizations and argue that this characteristic can empower a radical commitment to solidarity. Finally, we argue that CST provides a critical ethical framework for approaching solidarity from the perspective of the common good. (shrink)
Analysis and comparison of genetic screening programs shows that the extent of development of programs varies widely across Europe. Regional variations are due not only to genetic disease patterns but also reflect the novelty of genetic services. In most countries, the focus for genetic screening programs has been pregnant women and newborn children. Newborn children are screened only for disorders which are treatable. Prenatal screening when provided is for conditions for which termination may be offered. The only population screening programs (...) for adults are those for thalassaemia carrier status in Cyprus, Greece and Italy. Social responses to genetic screening range from acceptance to hostility. There is a fundamental tension between individual and communi ty in the debates in various European countries about implementation of screening programs. Opposition to genetic screening is frequently expressed in terms of arguments about "eugenics" with insufficient regard to the meaning of the term and its implications. Only a few countries have introduced explicit legislation on genetic screening. Legislation to address discrimination may provide more safeguards than legislation protecting genetic information itself. (shrink)
The Global Ethics Observatory, launched by the United Nations Educational, Scientific, and Cultural Organization in December 2005, is a system of databases in the ethics of science and technology. It presents data on experts in ethics, on institutions and on teaching programmes in ethics. It has a global coverage and will be available in six major languages. Its aim is to facilitate the establishment of ethical infrastructures and international cooperation all around the world.
This paper explores usage of the concept ofabnormality in medical genetics and proposesdirectives for more careful usage of this concept.The conceptual difficulties are first explored, thena model is developed to assess actual usage, followedby analysis of a sample of genetic textbooks andgenetics literature. It appears that fact andvaluation are often intermingled, that referencestandards used to define 'genetic abnormalities' areoften not clear and that the concept of abnormality isoften used independent of the degree of certainty withwhich the altered genetype develops into (...) a (seriously)harmful phenotype. On the basis of these findings itis argued that more restraint and more careful use ofthe concept of genetic abnormality of medical geneticsis appropriate as well as more agreement on the use ofreference standards. (shrink)
The Database on Ethics Related Legislation and Guidelines was launched in March 2007 as the fourth database of the UNESCO Global Ethics Observatory system of databases in ethics of science and technology. The database offers a collection of legal instruments searchable by region, country, bioethical themes, legal categories and applicability to specific articles of the UNESCO Universal Declaration on Bioethics and Human Rights and International Declaration on Human Genetic Data. This paper discusses the background and rationale for the database and (...) its role as a consultative and comparative resource hub for the study of ethics related legal instruments across the world, with the purpose of informing and inspiring relevant stakeholders on the implementation of the principles contained within the UNESCO declarations on bioethics. (shrink)
This contribution is a report of a two months' participant observation in a Dutch hospice. The goal of the observation was to gain an overview of moral decisions in a hospice in which euthanasia, a tolerated practice in the Netherlands, is not accepted as an option. In an introduction, the development of palliative care in the Netherlands will be briefly presented. Subsequently, various moral decisions that were taken during the participant observation are presented and analysed by means of case reports. (...) Attention is especially drawn to decisions that directly or indirectly relate to euthanasia. These moral decisions will be clarified in the light of the philosophy behind the concept of palliative care as it has evolved since the foundation of St Christopher's Hospice, London in 1967. (shrink)
Clarifying and analysing moral problems arising in the practice of palliative care was the objective of participatory observations in five palliative care settings. The results of these observations will be described in this contribution. The moral problems palliative caregivers have to deal with in their daily routines will be explained by comparison with the findings of a previously performed literature study. The specific differences in the manifestation of moral problems in the different palliative care settings will be highlighted as well.
Health technology assessment (HTA) is often biased in the sense that it neglects relevant perspectives on the technology in question. To incorporate different perspectives in HTA, we should pursue agreement about what are relevant, plausible, and feasible research questions; interactive technology assessment (iTA) might be suitable for this goal. In this way a kind of procedural ethics is established. Currently, ethics too often is focussed on the application of general principles, which leaves a lot of confusion as to what really (...) is the matter in specific cases; in an iTA clashes of values should not be approached by use of such ethics. Instead, casuistry, as a tool used within the framework of iTA, should help to articulate and clarify what is the matter, as to make room for explication and consensus building. (shrink)
OBJECTIVES: Cognitive and sensory difficulties frequently jeopardize informed consent of frail elderly patients This study is the first to test whether preliminary research experience could enhance geriatric patients' capacity to consent. DESIGN/SETTING: A step-wise consent procedure was introduced in a study on fluid balance in geriatric patients. Eligible patients providing verbal consent participated in a try-out of a week, during which bioelectrical impedance and weight measurements were performed daily. Afterwards, written informed consent was requested. Comprehension, risk and inconvenience scores (ranges: (...) 0-10) were obtained before and after the try-out by asking ten questions about the study's essentials and by asking for a risk and inconvenience assessment on a ten-points rating scale. SUBJECTS AND RESULTS: Seventy of the 78 eligible subjects started the try-out and 53 (68%) provided written consent. The comprehension score increased from 5.0 (+/- 2.3) to 7.0 (+/- 1.9) following the try-out (P < 0.001). The number of subjects capable of weighing risks and inconveniences increased from 32 to 48 (P < 0.001). CONCLUSIONS: Research experience improved the capacity to consent, still enabling an acceptable participation rate. Therefore, experienced consent seems a promising tool to optimize informed consent in frail elderly subjects. (shrink)
Three recent reports on genetic screening published in the United Kingdom, Denmark and the Netherlands are discussed. Comparison of the Dutch report with the Danish and the Nuffield reports reveals that the Dutch report focuses on the aim of enlarging the scope for action, emphasising protection of autonomy and self-determination of the screenee more than the other two reports. The three reports have in common that the main concern is with concrete issue such as stigmatisation, discrimination, protection of the private (...) sphere and issues linked with labour and insurance. Some potential long term consequences, however, tend to be neglected or underestimated. These omissions are pointed out. (shrink)
The number of national bioethics commissions has burgeoned since the establishment of the first one in 1983. They provide an arena in which stakeholders with widely differing moral views can discuss, interact and negotiate about controversial matters. The establishment of the Brazilian committee is used as an example of how such bodies can be introduced. If such councils are to be implemented effectively and regarded as legitimate, the society as a whole should be included in the construction of the proposal (...) and represented on the council, the council should have the benefit of specialist advice when that is needed, and the council should be linked to the elected government in an official advisory capacity. The article describes long process of planning and consultation to establish Brazil's National Bioethics Council and of eventually defining its task as advising the president on matters relating to bioethics. (shrink)