Ethicists differ considerably in their reasons for using empirical data. This paper presents a brief overview of four traditional approaches to the use of empirical data: “the prescriptive applied ethicists,” “the theorists,” “the critical applied ethicists,” and “the particularists.” The main aim of this paper is to introduce a fifth approach of more recent date (i.e. “integrated empirical ethics”) and to offer some methodological directives for research in integrated empirical ethics. All five approaches are presented in a table for heuristic (...) purposes. The table consists of eight columns: “view on distinction descriptive-prescriptive sciences,” “location of moral authority,” “central goal(s),” “types of normativity,” “use of empirical data,” “method,” “interaction empirical data and moral theory,” and “cooperation with descriptive sciences.” Ethicists can use the table in order to identify their own approach. Reflection on these issues prior to starting research in empirical ethics should lead to harmonization of the different scientific disciplines and effective planning of the final research design. Integrated empirical ethics (IEE) refers to studies in which ethicists and descriptive scientists cooperate together continuously and intensively. Both disciplines try to integrate moral theory and empirical data in order to reach a normative conclusion with respect to a specific social practice. IEE is not wholly prescriptive or wholly descriptive since IEE assumes an interdepence between facts and values and between the empirical and the normative. The paper ends with three suggestions for consideration on some of the future challenges of integrated empirical ethics. (shrink)

A review of the literature and ethnographic data from Australia, Canada, New Zealand, the United States, and the United Kingdom on the research ethics review process suggest that moral panics can become triggers for punctuated equilibrium in the review process at both the macro and microlevel, albeit with significantly different levels of magnitude and impact. These data suggest that neither the development of the ethics review process nor the process itself proceeds gradually, but both are characterized by periodic major shifts (...) evoked by particular events or situations that result in varying levels of moral panic. One way to deal with this moral panic is to increase the regulation of research and the depth or intensity of the scrutiny of applications under ethics review. Moral panics at the macrolevel influence those at the microlevel and, if the moral panic evoked at the local or microlevel is not satisfactorily resolved, it will evoke action at a higher level. Understanding the evolution of research ethics review processes from this perspective might help make actions by ethics committees and policy makers more understandable and help explain why attention to research ethics are heightened at particular points in time. It may also provide a basis for developing recommendations for adaptations to the ethics review process and policy at both the local and macrolevel. (shrink)

The field of bioethics is increasingly coming into contact with empirical research findings. In this article, we ask what role empirical research can play in the process of ethical clarification and decision-making. Ethical reflection almost always proceeds in three steps: the description of the moral question,the assessment of the moral question and the evaluation of the decision-making. Empirical research can contribute to each step of this process. In the description of the moral object, first of all, empirical research has a (...) role to play in the description of morally relevant facts. It plays a role in answering the “reality-revealing questions” (what, why,how, who, where and when), in assessing the consequences and in proposing alternative courses of action. Secondly, empirical research plays a role in assessing the moral question. It must be acknowledged that research possesses “the normative power of the factual,” which can also become normative by suppressing other norms. However, inductive normativity should always be balanced out by a deductive form of normativity. Thirdly, empirical research also has a role to play in evaluating the decision-making process. It can rule out certain moral choices by pointing out the occurrence of certain unexpected consequences or effects. It can also be useful, however, as a sociology of bioethics in which the discipline of bioethics itself becomes an object of research. (shrink)

The ArgumentPatients suffering from advanced, incurable cancer often receive from their doctors proposals to enroll in a clinical trial of an experimental therapy. Experimental therapies are increasingly perceived not as a highly problematic approach but as a near-standard way to deal with incurable cancer. There are, however, important differences in the diffusion of these therapies in Western countries. The large diffusion of experimental therapies for malignant disease in the United States contrasts with the much more restricted diffusion of these therapies (...) in the United Kingdom. The difference between the two reflects differences in the organization of health care in these countries and distinct patterns of the professionalization of medical oncology in America and in Britain. The high density and great autonomy of medical oncologists in the United States encourages there the diffusion of experimental therapies (regarded by some as expensive and inefficient); the lower density of these specialists in the United Kingdom and their task as consultants and not primary caregivers, favors the choice of more conservative (for some, too conservative) treatments. Theoretically, the decision as to whether patients suffering from advanced, incurable cancer will be steered toward an experimental therapy or toward palliative care depends on the values and beliefs of these patients and their physicians. In practice, however, such choice does not depend exclusively on the individual' cultural background and ethical values, but is also strongly affected by the — culturally conditioned — Professional and institutional structure of medicine. (shrink)

In this essay, I indicate how social-science approaches can throw light on predictive genetic testing (PGT) in various societal contexts. In the first section, I discuss definitions of various forms of PGT, and point out their inherent ambiguity and inappropriateness when taken out of an ideal–typical context. In section two, I argue further that an ethics approach proceeding from the point of view of the abstract individual in a given society should be supplemented by an approach that regards bioethics as (...) inherently ambiguous, contested, changeable and context-dependent. In the last section, I place these bioethical discussions of PGT in the context of Asian communities. Here, a critical view of what constitutes a community and culture proves necessary to understand the role of bioethical debates and the empirical manifestations of PGT in Asian societies. A discussion of the concepts of family and kinship in relation to PGT indicates that any bioethical analysis has to take into account that bioethical values are not just reflections of a cultural community, but embody both bioethical ideals and prevalent political rhetoric which is exhibited, propagated and manipulated by individuals and collectives for a variety of purposes. I end by summarising the contributions that social science could make to the understanding of the bioethics of PGT. (shrink)

Within this thesis, I argue for an interpretive approach to bioethics in pediatric intensive care. I begin by outlining the dominant bioethical doctrine that defines standards for ethical care in critically ill children. I critique this doctrine as legalistic and acultural. Drawing largely on the ideas of Charles Taylor, I call for a reconception of bioethics and propose an interpretive framework that is centred on culture and context. Finally, I illustrate this interpretive approach through a comparative study of two cases (...) in pediatric intensive care: the narratives of Marc and Larry. (shrink)