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      Neuroethics, confidentiality, and a cultural imperative in early onset Alzheimer disease: a case study with a First Nation population

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          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.

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          Enacting research ethics in partnerships with indigenous communities in Canada: "Do it in a good way".

          Two studies conducted through community-campus partnerships demonstrated emerging frameworks for ethical conduct of research involving Indigenous peoples in Canada. Both projects involved multiple Indigenous community partners whose interests in promoting children's development and fathers' involvement motivated the projects. The Indigenous projects were conceived within a broader social agenda of restorative justice and self-determination of Indigenous peoples in Canada following centuries of colonial government interventions. Guiding principles included community relevance, community participation, mutual capacity building, and benefit to Indigenous communities. Memoranda of Understanding negotiated with each community partner specified the roles of community and university partners and research team members in each phase of the research. Testimonials obtained from community representatives before and after the research projects indicated the success of the projects in yielding benefits to the communities in the form of substantive knowledge and strengthened capacities to engage in collaborative research through community-campus partnerships. The larger collaborative research projects in which these two Indigenous projects were embedded created challenges and opportunities due to varying recognition within these networks of the primacy of relationships as a foundation for research and the indeterminacy of outcomes when ownership of data and control over dissemination is in the hands of community partners.
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            DNA on loan: issues to consider when carrying out genetic research with aboriginal families and communities.

            In the current research milieu where genetic etiology is considered a critical component in the discovery of pathogenesis, aboriginal families and communities affected with genetic conditions may be considered as research participants. However, because of concerns about the impact of genetic information and historical harmful research practices, some aboriginal communities have considerable unease when faced with this prospect. Therefore, in the circumstance that genetics is considered an important part of research inquiry by aboriginal families and communities, there needs to be assurance that the research will be carried out according to mutual expectations. A research relationship that respects aboriginal individuals and communities within their culture and is in keeping with their values is essential. This respect extends to the use of biological samples, considering the DNA to be 'on loan' to the researcher for the purpose of the research for which consent was obtained. This paper will explore practical ways of maintaining a respectful research relationship when genetics research with aboriginal people is undertaken. Copyright 2006 S. Karger AG, Basel.
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              Indigenous peoples and the morality of the Human Genome Diversity Project.

              In addition to the aim of mapping and sequencing one human's genome, the Human Genome Project also intends to characterise the genetic diversity of the world's peoples. The Human Genome Diversity Project raises political, economic and ethical issues. These intersect clearly when the genomes under study are those of indigenous peoples who are already subject to serious economic, legal and/or social disadvantage and discrimination. The fact that some individuals associated with the project have made dismissive comments about indigenous peoples has confused rather than illuminated the deeper issues involved, as well as causing much antagonism among indigenous peoples. There are more serious ethical issues raised by the project for all geneticists, including those who are sympathetic to the problems of indigenous peoples. With particular attention to the history and attitudes of Australian indigenous peoples, we argue that the Human Genome Diversity Project can only proceed if those who further its objectives simultaneously: respect the cultural beliefs of indigenous peoples; publicly support the efforts of indigenous peoples to achieve respect and equality; express respect by a rigorous understanding of the meaning of equitable negotiation of consent, and ensure that both immediate and long term economic benefits from the research flow back to the groups taking part.
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                Author and article information

                Contributors
                Journal
                Philos Ethics Humanit Med
                Philos Ethics Humanit Med
                Philosophy, Ethics, and Humanities in Medicine : PEHM
                BioMed Central
                1747-5341
                2013
                16 October 2013
                : 8
                : 15
                Affiliations
                [1 ]National Core for Neuroethics, Division of Neurology, Department of Medicine, The University of British Columbia, 2211 Wesbrook Mall, Koerner S124, Vancouver, BC, Canada
                [2 ]Division of Geriatric Medicine, Department of Medicine, The University of British Columbia, Vancouver, BC, Canada
                [3 ]School of Social Work, The University of British Columbia, 2080 West Mall, Vancouver, BC, Canada
                [4 ]Clinic for Alzheimer Disease and Related Disorders, UBC Hospital 2211 Wesbrook Mall, Vancouver, BC, Canada
                Article
                1747-5341-8-15
                10.1186/1747-5341-8-15
                3853249
                24131854
                f586067a-b9a7-48b7-a444-1dc0e6b4dcbb
                Copyright © 2013 Stevenson et al.; licensee BioMed Central Ltd.

                This is an open access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

                History
                : 11 June 2013
                : 10 September 2013
                Categories
                Research

                Philosophy of science
                confidentiality,global health neuroethics,biomedical ethics,first nations,research ethics,early onset familial alzheimer disease,community-based research

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