Ethical framework of informed consent and decision-making in dementia research

• Autor(a) principal: Carvalho, A.
• Data de Publicação: 2017
• Outros Autores: Hernández-Marrero, P.
• Tipo de documento: Artigo
• Idioma: eng
• Título da fonte: Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
• Texto Completo: http://hdl.handle.net/10400.14/33928

Impaired decision-making capacity is a symptomatic feature in a number of neurodegenerative diseases, but the nature of these decision-making deficits depends on the particular disease. The level of impairment that renders a patient unable to make valid decisions should ideally reflect a societal judgment about the appropriate balance between respecting the patient’s autonomy and protecting the patient from the potentially negative consequences of such a decision. Although many types of decision-making exist, studies of decision-making in patients with neurodegenerative diseases generally use two decision-making paradigms; decision-making under ambiguity and decision-making under risk. The main objective of this study is to determine the issues that should be taken into account during the informed consent process. This study encompasses two intertwined phases. The results will be integrated into an in-depth normative analysis of the conceptual and ethical issues raised by the informed consent process in clinical dementia research.