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This article describes a generic model for access to samples and information in human genetic databases. The model utilises a "GeneTrustee", a third-party intermediary independent of the subjects and of the investigators or database custodians. The GeneTrustee model has been implemented successfully in various community genetics screening programs and has facilitated research access to genetic databases while protecting the privacy and confidentiality of research subjects. The GeneTrustee model could also be applied to various types of non-conventional genetic databases, including neonatal screening Guthrie card collections, and to forensic DNA samples. 相似文献
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In this paper I investigate the interaction of knowledge and institutions in the context of First Nations in the Pacific Northwest of Canada who have evolved management systems for fish and forest resources over hundreds of years. These management systems are viewed as institutions that are based on and apply knowledge systems over time. In the Nisga'a and Haida nations, knowledge systems guide management regimes that govern access, rights and responsibilities, harvesting, allocation of benefits and costs, technology, education and training. For the past hundred years these institutions and knowledge systems have come into conflict with knowledge and management systems imposed first by missionaries, settlers and colonizers and later from Provincial and National governments and corporations holding tenure rights assigned by those governments. National and international regimes such as the Law of the Seas and the Exclusive Economic Zones conflict with traditional institutions and knowledge systems by privileging one level of governance and consequently one form of knowledge and devaluing others. The paper is based on research conducted in the Pacific Northwest over the past eight years, primarily through interviews with elders, decision-makers, and resource users, as well as observation of cultural and resource practices. The research investigated the impacts of conflicting knowledge systems and the attempts to resolve those conflicts. The paper raises questions about knowledge systems and institutions, about institutional interplay, and the impact of international institutions on local institutions as they come into contact and conflict. 相似文献
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MacRae LM 《Baylor law review》1973,25(2):273-282
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Kimberly A. Lonsway Leslie V. Freeman Lilia M. Cortina Vicki J. Magley Louise F. Fitzgerald 《Law & social inquiry》2002,27(2):205-234
The role of trial judges in the litigation process is frequently debated. Are judges to be dispassionate adjudicators, disengaged referees in a sport in which attorneys compete? Or are they charged with a more active role in promoting the substance, form, and process of justice? In the present paper, we explore the judicial role in addressing gender bias in federal litigation, using data gathered for the Eighth Circuit Gender Fairness Task Force. The federal judges of this circuit were surveyed about their experiences, observations, and opinions of gender-biased conduct. Results indicated that although judges viewed judicial intervention as an appropriate response to gender bias, they had little personal experience with intervention in such a situation. Fur thermore, when specific hypothetical scenarios were presented, they generally agreed that the described conduct was inappropriate but offered little consensus regarding the best course of action for an attorney or judge confronted with such behavior. The Eighth Circuit data thus provide the basis for expanded understanding of the conduct at issue, the options for action in response, and the persistent discrepancy in viewpoints on gender bias and the judicial role. 相似文献