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P1‐212: Alzheimer's Disease Hippocampus Micro‐RNA Expression
Author(s) -
Bekris Lynn,
Yu Changen
Publication year - 2011
Publication title -
alzheimer's and dementia
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 6.713
H-Index - 118
eISSN - 1552-5279
pISSN - 1552-5260
DOI - 10.1016/j.jalz.2011.05.491
Subject(s) - microrna , hippocampus , cerebellum , biology , alzheimer's disease , gene expression , neuroscience , gene , disease , pathology , medicine , genetics
Background: For clinical research with First Nations, the marriage of cultural ideals and westernmedicine is dynamic. Many issues have arisen while working with a First Nation population in British Columbia who has EOFAD due to a unique mutation in the PS1 gene. This has led to an obligatory need for partnerships. The Nation members are close, interact regularly with one another through community activities on their traditional territory and have information access through various media.Methods:Qualitative evaluation of focus group sessions has revealed longstanding patterns of interactions with First Nations and western systems. In a follow-up community based research meeting, a member stated “I am not worried at all about stigmas because stereotyping has always been part of the First Nations.” At the same time, another remarked that “we won’t be acknowledged for the work we will be contributing if our nation remains anonymous.” Results:Discussion includes ownership: Who has the right to benefit from discovery or to determine use of the discovery? How can a clinical discovery transition to a community benefit, even if the discovery has a potential difficult consequence (EOFAD)? Can the community prepare for this? Does the community want to prepare for this, especially in the face of other priorities? Above all, how can the western ethics norm of protection of individual rights be consistent with and part of communal rights? Keeping the name of participants and their community confidential could undermine the higher ethical principal of relational accountability. Conclusions: Shene (2002) argues that the existence of a mutation should be regarded as familial information, not capable of veto by one family member. Port et al (2008) suggest that in a hierarchical tribal context, rights of the individual may be relinquished in favour of the rights of the tribe. To date, Canadian researchers working with Indigenous peoples are encouraged to followOCAP, which promotes collective Ownership, Control, Access, Possession of data. Reconciliation between OCAP and more usual academic and clinical structures needs a strong partnership. Bringing the groups to common ground reveals ongoing interactive thoughtful discussion.