Background Rare diseases are generally poorly understood from scientific and medical standpoints due, to their complexity and low prevalence. As a result, individuals living with rare diseases struggle to obtain timely diagnoses and suitable care. These clinical difficulties add to the physical and psychological impacts of living with chronic and often severe medical conditions. From the standpoint of pragmatist ethics, the morally problematic situations that adults living with rare diseases experience matter crucially. However, there is little known about these experiences.Methods (...) A survey study was conducted with 121 adults living with rare diseases in Québec, Canada, to identify morally problematic situations encountered in the healthcare system and everyday life as part of a participatory action research project. Morally problematic situations elicited internal tensions and constraints to agency.Results Adults living with rare diseases experienced morally problematic situations of stigmatization, disbelief, and sometimes abuse in the healthcare system. These situations were compounded by diagnostic delays, inadequate care, and suboptimal follow-up, and led some individuals to opt-out of medical care. In their personal lives, these individuals sometimes found themselves in situations of physical and financial dependency. They often also had to give up professional occupations, academic training, or life projects.Conclusions Adults living with rare diseases experience important morally problematic situations navigating the healthcare system and their everyday lives, some of which could be alleviated through interventions developed through future participatory action research. (shrink)

A multiple-case study of four hospital ethics committees in Canada was conducted and data collected included interviews with key informants, observation of committee meetings and ethics-related hospital documents, such as policies and committee minutes. We compared the hospital committees in terms of their structure, functioning and perceptions of key informants and found variation in the dimensions of empowerment, organizational culture of ethics, breadth of ethics mandate, achievements, dynamism, and expertise.

This paper examines the role of clinical ethics committees (CECs) in infertility clinics in the UK, focusing on whether they usefully support infertility clinicians' ethical decision-making. The overall aim of the study reported here was to investigate how infertility clinicians approached and handled ethical problems in their everyday practice and this paper reports on one aspect of these data – what they thought about the use of CECs. This paper gives an overview of what arrangements there are for such committees (...) in infertility clinics; considers why the clinicians used CECs; and examines how these committees provided a useful function in the infertility setting and contributed to making ‘good’ ethical decisions. Finally, the paper examines how the form of ethics support can be developed and strengthened, and concludes with recommendations for a particular model of CECs in infertility units – a designated CEC for each infertility unit. (shrink)

Bioethics has made a compelling case for the role of experience and empirical research in ethics. This may explain why the movement for empirical ethics has such a firm grounding in bioethics. However, the theoretical framework according to which empirical research contributes to ethics—and the specific role it can or should play—remains manifold and unclear. In this paper, we build from pragmatic theory stressing the importance of experience and outcomes in establishing the meaning of ethics concepts. We then propose three (...) methodological steps according to which the meaning of ethics concepts can be refined based on experience and empirical research: function identification, function enrichment, and function testing. These steps are explained and situated within the broader commitment of pragmatic ethics to a perspective of moral growth and human flourishing. We hope that this proposal will give specific direction to the bridging of theoretical and empirical research in ethics and thus support stronger actualization of ethics concepts. (shrink)

Ethics is often viewed as the elaboration of and compliance to norms, a.k.a. as the deductive model of ethics. This is well illustrated by the mainstream development of codes of ethics and ethics committees in the healthcare setting and beyond. Drawing upon a recent synthesis of pragmatist insights on the nature of ethics as well as contemporary scholarship on human flourishing, I explain how ethics is not primarily about the compliance of experience and agency to preset norms but about liberation (...) and empowerment within a process of existential meaning-making. This point is made in the context of two important tasks of ethics: (1) understanding moral problems and (2) providing guidance for solving such problems. (shrink)