Contemporary American medical ethics was born during a period of social ferment, a key theme of which was the espousal of individual rights. Driven by complex cultural forces united in the effort to protect individuality and self-determined choices, an extrapolation from case law to rights of patients was accomplished under the philosophical auspices of ‘autonomy’. Autonomy has a complex history; arising in the modern period as the idea of self-governance, it received its most ambitious philosophical elaboration in Kant's moral philosophy. (...) In examining the Kantian construction, it is evident that neither his universal moral imperative nor his rigorous application of self-legislated ethical action can sustain our own notions of moral agency in a pragmatic, pluralistic society. But the Kantian position is useful in highlighting that self-governance is not equivalent to ‘autonomy’, and this distinction defines the limits of autonomy in the clinical setting. A critique of Engelhardt's idea of ‘principle of permission’ is used to illustrate autonomy's eclipse as a governing principle for medical ethics. (shrink)

This paper challenges the traditional assumption that descriptive and prescriptive sciences are essentially distinct by presenting a study on the implicit normativity of the production and presentation of biomedical scientific facts within evidence-based medicine. This interdisciplinary study serves as an illustration of the potential worth of the concept of implicit normativity for bioethics in general and for integrated empirical ethics research in particular. It demonstrates how both the production and presentation of scientific information in an evidence-based decision-support contain implicit presuppositions (...) and values, which pre-structure the moral environment of the clinical process of decision-making. As a consequence, the evidence-based decision support did not only support the clinical decision-making process; it also transformed it in a morally significant way. This phenomenon undermines the assumption within much of the literature on patient autonomy that information disclosure is a conditional requirement before patient autonomy even starts; patient autonomy is already influenced during the production and presentation of information. These results imply an increased responsibility of those who produce and present evidence-based facts(i.e. scientists in general and physicians in particular). The insights of this study not only involve a different focus on both theory and practice of patient autonomy and informed consent, but they also call for a broader scope of morality than does traditional empirical research in bioethics. The concept of implicit normativity within integrated empirical ethics research calls for a strong cooperation between bioethicists and descriptive scientists, i.e., a cooperation that goes beyond the discipline-specific epistemic values and that takes place during all phases of the research process. (shrink)

The rise of genetic techniques presents a great promise as well as some difficult dilemma's about how genetics will affect the way we will be able to live our lives. For this reason, in many countries, public debates are organized to reflect upon the development of predictive medicine. In this essay we focus on economist A. Hirschman's work on “exit, voice and loyalty” to analyse and enrich these public debates. We first introduce Hirschman's triad of concepts and focus on the (...) concept of “voice,” which refers to an institution's ability to allow clients to give feedback about products or services, and its ability to listen to the feedback given. We argue that voice is particularly important for the health care system in which predictive medicine is developing. Voice is crucial because how predictive medicine will become institutionalised is now in the process of becoming determined. However, in public debates about predictive medicine, voice tends to be reduced to providing people with the option of making a choice whether to use genetic techniques or not. We argue that this reduction of voice to choice is not very informative about predictive medicine and suggest an amendment of Hirschman's concept of voice, which we call “hesitant voice.” Hesitant voice attempts to be informative about the uncertainty people experience in addressing predictive medicine and topicalises the gradual, the embodied, the tentative character of voice in developing situations like that of predictive medicine. (shrink)

The article argues against the common notion ofdisciplinary medical traditions, i.e. Obstetrics, asmacro-structures that quite unilinearily structure thepractices associated with the discipline. It shows that the various existences of Obstetrics, their relations with practices and vice versa, the entities these obstetrical practices render present and related, and the ways they are connected to experiences, are more complex than the unilinear model suggests. What allows participants to go from one topos to another – from Obstetrics to practice, from practice to politics, (...) from politics to experience – is not self-evidently induced by Obstetrics, but needs to be studied as a surprising range of passages that connect (or don't). Techniques and devices to supervise the delivery, to render present the fetus during pregnancy, and to monitoring birth, are described in order to show that such techniques acquire different roles in connecting and creating Obstetrics as a system andobstetrical practices. (shrink)