0000000000010459
AUTHOR
Tobias Hainz
Additional file 1: Table S1. of Collective agency and the concept of ‘public’ in public involvement: A practice-oriented analysis
The discursive dilemma in biobanking. This additional file provides further information on a theoretical problem in judgment aggregation, known as the ‘discursive dilemma’. First, the discursive dilemma will be introduced in a context-neutral way before its relevance will be demonstrated in an example referring to the context of biobanking [61, 62]. (DOCX 17.4 kb)
Ethics Literacy and "Ethics University": Two Intertwined Models for Public Involvement and Empowerment in Bioethics.
Background Informing lay citizens about complex health-related issues and their related ethical, legal, and social aspects (ELSA) is one important component of democratic health care/research governance. Public information activities may be especially valuable when they are used in multi-staged processes that also include elements of information and deliberation. Objectives This paper presents a new model for a public involvement activity on ELSA (Ethics University) and evaluation data for a pilot event. Methods The Ethics University is structurally based on the “patient university,” an already established institution in some German medical schools, and the newly developed concept of “ethic…
Collective agency and the concept of ‘public’ in public involvement: A practice-oriented analysis
Background Public involvement activities are promoted as measures for ensuring good governance in challenging fields, such as biomedical research and innovation. Proponents of public involvement activities include individual researchers as well as non-governmental and governmental organizations. However, the concept of ‘public’ in public involvement deserves more attention by researchers because it is not purely theoretical: it has important practical functions in the guidance, evaluation and translation of public involvement activities. Discussion This article focuses on collective agency as one property a public as a small group of participants in a public involvement activity could exhib…