The ethics of ‘public understanding of ethics’—why and how bioethics expertise should include public and patients’ voices

Abstract

“Ethics” is used as a label for a new kind of expertise in the field of science and technology. At the same time, it is not clear what ethical expertise consists in and what its political status in modern democracies can be. Starting from the “participatory turn” in recent social research and policy, we will argue that bioethical reasoning has to include public views of and attitudes towards biomedicine. We will sketch the outlines of a bioethical conception of “public understanding of ethics,” addressing three different issues: (a) the methodological relevance of moral questions and problems raised by lay persons in everyday life regarding biomedicine and technology, (b) the normative relevance of such lay moralities for the justification of ethical decisions, and (c) the necessity of public deliberation in this context. Finally, we draw conclusions in view of the concepts and methods such a conception of “public understanding of ethics” should employ.

Empirical Support for the Moral Salience of the Therapy-Enhancement Distinction in the Debate Over Cognitive, Affective and Social Enhancement

“…Following acknowledgement of informed consent and completion of demographic questions regarding age and biological sex, participants were randomly assigned to read one (and only one) of 24 between-subjects design. The selection of the different domains was inspired by the self-identity and personality literature, as well as bioethical literature in general [29].…”

“…One way of approaching the issue is to query the public about their enthusiasms and concerns with regard to enhancement of human brains [21][22][23]. This is not merely a matter of philosophical and bioethical concern, but also one with substantive policy implications [24,25] for the closer we align policy with public norms, the less likely we are to encounter transgressions such as diversion of prescription pharmaceuticals [26].…”

Biobank participation and returning research results: Perspectives from a deliberative engagement in South Side Chicago

“…Rather than simply seeking public “votes” or “raw opinions,” this method views deliberation as central to ensuring that participants are informed and can discuss the specific policy questions. This process can be adapted to examine scientific policies, about which the public is often poorly informed, so that public participation can become meaningful, and to allow informed citizens to engage critically in discussion and policy [Kim et al, 2009; Schicktanz et al, 2011]. One effort to engage the public in deliberative democracy regarding biobanks was conducted in British Columbia [MacLean and Burgess, 2010].…”

The Model of Bioethics as “Semiotic Attractors” for Diagnosing Innovative Strategies of Training Specialists for NBICS-Technologies Niche

“…Thus, comprehension of inter-relation of the procedures turns into extremely important point. The procedures are: 1) a humanitarian review of consequences of NBICS-technologies' implementation [5]; 2) an ethical review of experiments with participation of human beings in the course of those technologies elaboration [6][7]; 3) a socio-cultural review of humanitarian education's content aimed at specialists prepared for these technologies [8][9][10][11][12][13]. The problem of the knowledge management related to NBICStechnologies stimulates a convergent nature of all creations and its implementations.…”