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Access and benefits sharing of genetic resources and associated traditional knowledge in northern Canada: understanding the legal environment and creating effective research agreements

https://arctichealth.org/en/permalink/ahliterature284320
Source
Pages 912-920 in N. Murphy and A. Parkinson, eds. Circumpolar Health 2012: Circumpolar Health Comes Full Circle. Proceedings of the 15th International Congress on Circumpolar Health, Fairbanks, Alaska, USA, August 5-10, 2012. International Journal of Circumpolar Health 2013;72 (Suppl 1):912-920
Publication Type
Article
Date
2013
  1 document  
Author
Geary J1, Jardine CG, Guebert J, Bubela T.
Author Affiliation
School of Public Health, University of Alberta, Edmonton, Canada
Source
Pages 912-920 in N. Murphy and A. Parkinson, eds. Circumpolar Health 2012: Circumpolar Health Comes Full Circle. Proceedings of the 15th International Congress on Circumpolar Health, Fairbanks, Alaska, USA, August 5-10, 2012. International Journal of Circumpolar Health 2013;72 (Suppl 1):912-920
Date
2013
Publication Type
Article
Digital File Format
Text - PDF
Physical Holding
University of Alaska Anchorage
Keywords
Access to Information/legislation & jurisprudence
Biomedical Research/legislation & jurisprudence
Biomedical Research/organization & administration
Canada
Community-Institutional Relations/legislation & jurisprudence
Culture
Financing, Government
Genetics, Medical/legislation & jurisprudence
Genetics, Medical/organization & administration
Health Policy
Humans
Indians, North American/ethnology
Indians, North American/genetics
Indians, North American/legislation & jurisprudence
Documents
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[Computer systems in supporting the operation of medico-genetic establishments].

https://arctichealth.org/en/permalink/ahliterature199754
Source
Vestn Ross Akad Med Nauk. 1999;(11):40-4
Publication Type
Article
Date
1999
Author
B A Kobrinskii
Source
Vestn Ross Akad Med Nauk. 1999;(11):40-4
Date
1999
Language
Russian
Publication Type
Article
Keywords
Computer Systems
Genetics, Medical - organization & administration
Humans
Medical Records Systems, Computerized - organization & administration
Russia
Abstract
Nowadays there is a transition from the automation of some tasks to a complex computerization of medicogenetic service in Russia on the basis of the Federal genetic register. The system is multifunctional and ensures the keeping all medical records. It is realized through the corporate global network. The operations performed will also provide an intellectual support of medical geneticists' decisions.
PubMed ID
10635754 View in PubMed
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The integration of citizens into a science/policy network in genetics: governance arrangements and asymmetry in expertise.

https://arctichealth.org/en/permalink/ahliterature139764
Source
Health Expect. 2011 Sep;14(3):261-71
Publication Type
Article
Date
Sep-2011
Author
Geneviève Daudelin
Pascale Lehoux
Julia Abelson
Jean L Denis
Author Affiliation
Institute of Public Health Research at the University of Montreal (IRSPUM), Canada.
Source
Health Expect. 2011 Sep;14(3):261-71
Date
Sep-2011
Language
English
Publication Type
Article
Keywords
Biomedical Research - organization & administration
Canada
Consumer Participation - methods
Genetics, Medical - organization & administration
Humans
Policy Making
Public Policy
Social Support
Abstract
OBJECTIVE While there are increasing calls for public input into health research and policy, the actual obtaining of such input faces many challenges in practice. This article examines how a Canadian science/policy network in the field of genetics integrated citizens into its structure and then managed their participation. METHODS Our ethnographic case study covers a 5-year period (2003-08) and combines four data sources: observations of the network's meetings and informal activities, debriefing sessions with the network's leaders, semi-structured interviews with network members (n = 20) and document analysis. RESULTS When setting up the network, the leaders wanted to include a range of perspectives (research, clinical and policy) to increase the relevance of their research production and knowledge-transfer activities. After 2 years of operation, the network's members agreed to also include citizens who were not knowledgeable in genetics and policy issues. As neither the structure nor the dynamics of the network were modified, the citizens very soon started to feel uncomfortable with their role. They doubted the relevance of their contribution, pointing to an asymmetry in knowledge between them and the expert members. There were significant tensions in the network's governance and the citizens' concerns during the process were not fully addressed. CONCLUSION The integration of citizens into transdisciplinary networks requires recognizing and addressing the asymmetry of expertise that underpins such a collaborative endeavour. It also requires understanding that citizens may feel uncomfortable adopting the pre-defined role ascribed to them, may need a space of their own or may even withdraw if they feel being used.
PubMed ID
21029284 View in PubMed
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