title: Neuroethics, confidentiality, and a cultural imperative in early onset Alzheimer disease: a case study with a First Nation population.
abstract: The meaningful consideration of cultural practices, values and beliefs is a necessary component in the effective translation of advancements in neuroscience to clinical practice and public discourse. Society's immense investment in biomedical science and technology, in conjunction with an increasingly diverse socio-cultural landscape, necessitates the study of how potential discoveries in neurodegenerative diseases such as Alzheimer disease are perceived and utilized across cultures. Building on the work of neuroscientists, ethicists and philosophers, we argue that the growing field of neuroethics provides a pragmatic and constructive pathway to guide advancements in neuroscience in a manner that is culturally nuanced and relevant. Here we review a case study of one issue in culturally oriented neuroscience research where it is evident that traditional research ethics must be broadened and the values and needs of diverse populations considered for meaningful and relevant research practices. A global approach to neuroethics has the potential to furnish critical engagement with cultural considerations of advancements in neuroscience.
authors.forename: Shaun
authors.initials: S
authors.lastname: Stevenson
authors.forename: B Lynn
authors.initials: BL
authors.lastname: Beattie
authors.forename: Richard
authors.initials: R
authors.lastname: Vedan
authors.forename: Emily
authors.initials: E
authors.lastname: Dwosh
authors.forename: Lindsey
authors.initials: L
authors.lastname: Bruce
authors.affiliation: National Core for Neuroethics, Division of Neurology, Department of Medicine, The University of British Columbia, 2211 Wesbrook Mall, Koerner S124, Vancouver, BC, Canada. jilles@mail.ubc.ca.
authors.forename: Judy
authors.initials: J
authors.lastname: Illes
mesh_terms: D000544:Alzheimer Disease; D035843:Biomedical Research / Q000941:ethics; D002170:Canada; D003219:Confidentiality / Q000941:ethics*; D003469:Culture; D006801:Humans; D009488:Neurosciences / Q000941:ethics*; D019982:Organizational Case Studies; D044382:Population Groups