Background The increase in empirical methods of research in bioethics over the last two decades is typically perceived as a welcomed broadening of the discipline, with increased integration of social and life scientists into the field and ethics consultants into the clinical setting, however it also represents a loss of confidence in the typical normative and analytic methods of bioethics. Discussion The recent incipiency of "Evidence-Based Ethics" attests to this phenomenon and should be rejected as a solution to the current (...) ambivalence toward the normative resolution of moral problems in a pluralistic society. While "evidence-based" is typically read in medicine and other life and social sciences as the empirically-adequate standard of reasonable practice and a means for increasing certainty, I propose that the evidence-based movement in fact gains consensus by displacing normative discourse with aggregate or statistically-derived empirical evidence as the "bottom line". Therefore, along with wavering on the fact/value distinction, evidence-based ethics threatens bioethics' normative mandate. The appeal of the evidence-based approach is that it offers a means of negotiating the demands of moral pluralism. Rather than appealing to explicit values that are likely not shared by all, "the evidence" is proposed to adjudicate between competing claims. Quantified measures are notably more "neutral" and democratic than liberal markers like "species normal functioning". Yet the positivist notion that claims stand or fall in light of the evidence is untenable; furthermore, the legacy of positivism entails the quieting of empirically non-verifiable considerations like moral claims and judgments. As a result, evidence-based ethics proposes to operate with the implicit normativity that accompanies the production and presentation of all biomedical and scientific facts unchecked. Summary The "empirical turn" in bioethics signals a need for reconsideration of the methods used for moral evaluation and resolution, however the options should not include obscuring normative content by seemingly neutral technical measure. (shrink)

Monitoring and assistive technologies (MATs) are being used more frequently in healthcare. A central ethical concern is the compatibility of these systems with the moral preferences of their users—an issue especially relevant to participatory approaches within the ethics-by-design debate. However, users’ incapacity to communicate preferences or to participate in design processes, e.g., due to dementia, presents a hurdle for participatory ethics-by-design approaches. In this paper, we explore the question of how the value preferences of users in the field of dementia (...) care can be integrated into AI-based MATs. First, we briefly introduce different ethics-by-design approaches and explain the challenges they face in dementia care. Next, we introduce a novel approach for addressing these challenges. Through a qualitative content analysis of interviews with persons with dementia and their family caregivers (n = 27), we identified multiple ideal–typical value preference profiles. We then applied these profiles in a computer simulation, by which we also introduce the concept of ethical compliance quantification to scale the moral preferences of the interviewees for the simulation. Finally, we discuss study results, the advantages of using computer simulations, and general study limitations before drawing conclusions for further research. The study contributes to the ongoing debate on participatory ethics-by-design by defining on the basis of empirical data ideal–typical value preference frameworks that can be used to guide MAT actions and their outcomes. Going forward, MAT end-users with dementia and other communication-impaired persons could be enabled to choose a value profile that best fits their moral preferences. (shrink)

BackgroundThis is the first qualitative study to investigate how researchers, who do empirical work in bioethics, relate to objectives of empirical research in bioethics (ERiB). We explore reasons that make some objectives more acceptable, while others are deemed less acceptable.MethodsUsing qualitative exploratory study design, we interviewed bioethics researchers, who were selected to represent different types of scholars working in the field. The interview data of 25 participants were analyzed in this paper using thematic analysis. ResultsFrom the eight objectives presented to (...) the study participants, understanding the context of a bioethical issue and identifying ethical issues in practice received unanimous agreement. Participants also supported other objectives of ERiB but with varying degrees of agreement. The most contested objectives were striving to draw normative recommendations and developing and justifying moral principles. The is-ought gap was not considered an obstacle to ERiB, but rather a warning sign to critically reflect on the normative implications of empirical results.ConclusionsOur results show that the most contested objectives are also the more ambitious ones, whereas the least contested ones focus on producing empirical results. The potential of empirical research to be useful for bioethics was mostly based on the reasoning pattern that empirical data can provide a testing ground for elements of normative theory. Even though empirical research can inform many parts of bioethical inquiry, normative expertise is recommended to guide ERiB. The acceptability of ambitious objectives for ERiB boils down to finding firm ground for the integration of empirical facts in normative inquiry. (shrink)

Cases—be they real or fictional—are commonplace both in the medical ethics literature and in the public media. Cases take on a variety of forms: from streamlined to book length narratives. They also serve a variety of different purposes, from illustration, to decision making, and from debunking to heuristics. Drawing on the rhetorical analysis of « exemplum », I shall describe what cases are, and what their role is in the practice of clinical ethics. I identify two basic ways in which (...) cases can be brought to bear on ethical thinking and practice: a « tamed » and a « wild » way, and show how « wild cases » can serve a useful heuristic function despite their appeal to emotions and their unusual and striking character. In conclusion, I will argue that cases, both in their wild and their tamed form, are not only useful pedagogical tools, but can serve as a legitimate empirical basis for medical ethics. (shrink)

The use of foster children as subjects in the pediatric HIV/AIDS clinical trials has been the subject of media controversy, raising a range of ethical and social dimensions. Several unsettled issues and debates in research ethics underlie the controversy and the lack of consensus among professional researchers on these issues was neither adequately appreciated nor presented in media reports. These issues include (1) the tension between protecting subjects from research risk while allowing them access to the possible benefits of research; (...) (2) the blurring of the potentially conflicting roles of investigator and physician and the boundaries between research and therapy; (3) the adequacy of Institutional Review Board oversight; and (4) trust and the relationships among physicians, investigators and industry. The media controversy about the pediatric HIV/AIDS clinical trials can be seen as a means of “manufacturing mistrust” in health care, research and social services that have not always met the needs and expectations of the public. In an era of emerging infections, it is critical to the public’s health that people understand the role of rigorous and ethical research in the development of safe and effective care. Investigators, journalists and the public need to become knowledgeable about major ethical issues in the conduct of research in order to engage in dialogue about balancing research risks and benefits and to be able to distinguish fact from distortion in an era of multiple and rapid transmission of information. (shrink)

What does it mean to be a bioethicist? How should the role(s) of bioethics be understood in the context of a world of intense value conflict and polarisation? Bioethics is—in all its various forms and traditions—potentially well-positioned to contribute to addressing many of the most pressing challenges of value polarisation and conflict in diverse societies. However, realising this potential is going to require moving beyond currently foregrounded methods and developing new models for engaging with moral disagreement. This paper proposes an (...) approach, ‘adversarial cooperation,’ drawing on the concepts of ‘adversarial collaboration’ from the sciences and ‘antagonistic cooperation’ from the humanities. Adversarial cooperation aims to combine the rigour and structured methodology of adversarial collaboration with the cultural sensitivity and expansive vision of antagonistic cooperation. The paper also addresses key challenges to adversarial cooperation, including ethical considerations, tensions between substantive and procedural values, the problem of misinformation and the need for decision-making amidst ongoing disagreement. Ultimately, adversarial cooperation suggests a reimagining of bioethical expertise, emphasising skills in mediation, the arts and humanities and participatory decision-making alongside established philosophical competencies. This implies a model of normative bioethical authority grounded in the ability to facilitate inclusive and trustworthy processes of moral deliberation. Realising the potential of adversarial cooperation will require significant changes in bioethics training and practice, as well as a commitment to reflexivity, humility and the amplification of marginalised voices. By embracing this approach, bioethics can play a vital role in navigating the complex moral landscapes of pluralistic societies. (shrink)

There are competing accounts of the birth of bioethics. Despite the differences among them, these accounts share the claim that bioethics was not born in a single disciplinary home or in a single social space, but in numerous, including hospitals, doctors' offices, research laboratories, courtrooms, medical schools, churches and synagogues, and philosophy classrooms. This essay considers the interdisciplinarity of bioethics and the contribution of new disciplines to bioethics. It also explores the implications of interdisciplinarity for bioethics education. As bioethics develops, (...) it will be helpful to identify essential elements in the education of bioethicists and to distinguish between members of other disciplines who make important contributions to bioethics and bioethicists. (shrink)

Objective: To analyse the time variation of topics in bioethical publications as a proxy of the relative importance.Methods: We searched the Medline database for bioethics publications using the words “ethics or bioethics”, and for 360 specific topics publications, associating Medical Subject Heading topic descriptors to those words. We calculated the ratio of bioethics publications to the total publications of Medline, and the ratio of each topic publications to the total bioethics publications, for five-year intervals, from 1970 to 2004. We calculated (...) the time variation of ratios, dividing the difference between the highest and lowest ratio of each topic by its highest ratio. Four topics were described, selected to illustrate different patterns of variation: “Induced Abortion”, “Conflict of Interest”, “Acquired Immunodeficiency Syndrome”, “Medical Education.”Results: The ratio of bioethics publications to total Medline publications increased from 0.003 to 0.012. The variation of the topic’s ratios was higher than 0.7 for 68% of the topics. The Induced Abortion ratios decreased from 0.12 to 0.02. Conflict of Interest ratios increased from zero to 0.07. The Acquired Immunodeficiency Syndrome ratios were nearly zero in the first three intervals, had a peak of 0.06 during 1985–9, followed by a decrease to 0.01. Medical Education ratios varied few, from 0.04 to 0.03.Conclusions: There was an increase of bioethical publications in the Medline database. The topics in bioethics literature have an important time variation. Some factors were suggested to explain this variation: current legal cases, resolution of the issue, saturation of a discussion and epidemiologic importance. (shrink)

Clinical ethics consultation has developed from local pioneer projects into a field of growing interest among both clinicians and ethicists. What is needed are more systematic studies on the ethical challenges faced in clinical practice and problem solving through ethics consultation from interdisciplinary perspectives. The Thematic Issue covers a range of topics and includes five recent studies from various European countries and the USA, focusing on issues such as the ethical difficulties of end of life decisions, experiences with newly developed (...) or well established ethics consultation services, and the expectations of physicians in various clinical fields who are still unfamiliar with clinical ethics consultation. The papers included illustrate the interface between different socio-cultural contexts and their ways of dealing with clinical ethics consultation. They deepen the dialogue on clinical ethics consultation that has emerged at the European and International level. (shrink)

In November 2004, the Swiss population voted to accept a law on research using human embryonic stem cells. In this paper, we use Switzerland as a case study of the shaping of the ostensibly ethical debate on the use of embryos in embryonic stem cell research by legal, political and social constraints. We describe how the national and international context affected the content and wording of the law. We discuss the consequences of the revised law's separation of stem cell research (...) from other forms of embryo research, its definitions of embryo and of spare embryos, and the introduction of donorship into the Swiss ethical debate on IVF. We focus on the exclusion of the potential embryo donors' voices and perspectives from the debate, and consider the effects of this exclusion on ethical discourse and the political process. (shrink)

ZusammenfassungDie empirische Ethik sieht ihre eigene Aufgabe darin, soziale und kulturelle Aspekte der Medizin zu berücksichtigen. Damit trennt sie den wissenschaftlich kognitiven Aspekt der Medizin von kulturell normativen Aspekten, die einzig sozialwissenschaftlich zu erforschen wären. Wenn Medizin aber als gesellschaftliche Praxis begriffen wird, wird die saubere Trennung zwischen naturwissenschaftlicher Medizin, kulturell-normativen Aspekten und ethischer Reflexion durchbrochen. Wir schlagen vor, ethische Reflexion und empirische sozialwissenschaftliche Forschung in mehrstufiger Weise aufeinander zu beziehen. Den Sozialwissenschaften kommt dabei die Funktion einer ersten Reflexionsinstanz der (...) medizinischen Praxis zu, an die in einem zweiten Schritt die Medizinethik reflexiv anschließt und sich dabei wieder einer soziologischen Kritik stellen muss. (shrink)