Citizen science models of public participation in scientific research represent a growing area of opportunity for health and biomedical research, as well as new impetus for more collaborative forms of engagement in large-scale research. However, this also surfaces a variety of ethical issues that both fall outside of and build upon the standard human subjects concerns in bioethics. This article provides background on citizen science, examples of current projects in the field, and discussion of established and emerging ethical issues for (...) citizen science in health and biomedical research. (shrink)

BackgroundMoral Case Deliberation is a specific form of bioethics education fostering professionals’ moral competence in order to deal with their moral questions. So far, few studies focus in detail on Moral Case Deliberation methodologies and their didactic principles. The dilemma method is a structured and frequently used method in Moral Case Deliberation that stimulates methodological reflection and reasoning through a systematic dialogue on an ethical issue experienced in practice.MethodsIn this paper we present a case-study of a Moral Case Deliberation with (...) the dilemma method in a health care institution for people with an intellectual disability, describing the theoretical background and the practical application of the dilemma method. The dilemma method focuses on moral experiences of participants concerning a concrete dilemma in practice. By an in-depth description of each of the steps of the deliberation process, we elucidate the educational value and didactics of this specific method.ResultsThe didactics and methodical steps of the dilemma method both supported and structured the dialogical reflection process of the participants. The process shows that the participants learned to recognize the moral dimension of the issue at stake and were able to distinguish various perspectives and reasons in a systematic manner. The facilitator played an important role in the learning process of the participants, by assisting them in focusing on and exploring moral aspects of the case.DiscussionThe reflection and learning process, experienced by the participants, shows competency-based characteristics. The role of the facilitator is that of a Socratic teacher with specific knowledge and skills, fostering reflection, inquiry and dialogue.ConclusionThe specific didactics of the dilemma method is well suited for teaching bioethics in clinical settings. The dilemma method follows an inductive learning approach through a dialogical moral inquiry in which participants develop not only knowledge but also skills, attitude and character. The role of a trained facilitator and a specific view on teaching and practicing ethics are essential when using the dilemma method in teaching health care professionals how to reflect on their own moral issues in practice. (shrink)

This book provides a framework for approaching ethical and policy dilemmas in research with human subjects from the perspective of trust. It explains how trust is important not only between investigators and subjects but also between and among other stakeholders involved in the research enterprise, including research staff, sponsors, institutions, communities, oversight committees, government agencies, and the general public. The book argues that trust should be viewed as a distinct ethical principle for research with human subjects that complements other principles, (...) such as autonomy, beneficence, non-maleficence, and justice. The book applies the principle of trust to numerous issues, including informed consent, confidentiality, risk minimization, risks and benefits, protection of vulnerable subjects, experimental design, research integrity, and research oversight.This work also includes discussions of the history of research involving human subjects, moral theories and principles, contemporary cases, and proposed regulatory reforms. The book is useful for undergraduate and graduate students studying ethical policy issues related to research with human subjects, as well as for scientists and scholars who are interested in thinking about this topic from the perspective of trust. (shrink)

In this article we address the social value of bioethics research and show how a participatory approach can achieve social impact for a wide audience of stakeholders, involving them in a process of joint moral learning. Participatory bioethics recognizes that research co-produced with stakeholders is more likely to have impact on healthcare practice. These approaches aim to engage multiple stakeholders and interested partners throughout the whole research process, including the framing of ideas and research questions, so that outcomes are tailored (...) to the interests and context, and the type of impact stakeholders envisage. There is an emphasis on realizing social change through the conduct of the research, and it is believed that the engagement of stakeholders in the research process will promote their intrinsic motivation to change their practice. Another distinctive feature of participatory bioethics research is that its central normative commitment is to reflection and dialogue, not to a particular substantive ethical approach. In reflection and dialogue there is an emphasis on inclusion and the co-production of knowledge. Furthermore, empirical and normative research are combined, and there is a deliberate attempt to give voice to otherwise marginalized positions. This provides a model of social impact which is relevant not only for bioethics research, but also for other areas of health care research. We will show the merits of a participatory approach to bioethics research with a case example. It concerns the reduction of coercion and in particular seclusion in Dutch mental healthcare. (shrink)