People with dementia have commonly been excluded from research. The adverse impacts of this exclusion are now being recognized and research literature, position statements, and ethics guidelines increasingly call for inclusion of people with dementia in research. However, few published studies investigate the views of potential participants on taking part in research should they experience dementia-related cognitive impairment. This cross-sectional survey examined the views of people aged sixty and older attending hospital outpatient clinics about clinical research participation if they had (...) dementia and impaired decision-making ability. Over 90 percent of respondents were agreeable to participating in a wide range of research activities, such as cognitive testing, physical measurements, imaging procedures, and blood draws. For drug studies, however, agreement dropped to 60 percent. Altruism was a strong motivator for research participation. In regard to who should be involved in decisions about their participation in research during periods of incapacity, respondents mostly preferred the person they appoint as their substitute decision-maker for healthcare matters or a doctor or health professional on the research team. Over three-quarters expressed interest in making an advance research directive. The study findings are discussed in relation to law reforms in Australia that aim to strengthen respect and inclusion for people with impaired decision-making capacity, especially by providing frameworks for advance planning for research participation. (shrink)

There has been an increase in recent years in the use of empirical methods in healthcare ethics. Appeals to empirical data cannot answer moral questions, but insights into the knowledge, attitudes, experience, preferences and practice of interested parties can play an important part in the development of healthcare ethics. In particular, while we may establish a general ethical principle to provide explanatory and normative guidance for healthcare professionals, the interpretation and application of such general principles to actual practice still requires (...) interpretation and judgement. And many situations in healthcare practice are complex and may involve a variety of principles, each of which may conflict with the others. Simple surveys or interview studies may not be sufficient if we wish to develop a nuanced approach to ethical practice that can be set out in guidelines, codes or directives. We do not resolve moral questions by plebiscite. In this paper, the authors argue for the use of consensus methods to develop shared understanding of ethical practice, and they argue further for the combination of the Delphi method with the use of vignettes to illustrate the kind of situations that may occur in practice. They develop their argument in part by reference to their experience of using this approach in their recent research. (shrink)