Evidence Library

Abstract:

Aim: To assess how policy statements address public involvement in the context of human genetics or genomics.

Methods: A systematic review of policy documents/ guidelines published between 1998 and 2009 in the area of human genomics.

Findings: The majority of policy documents in human genomics fail to explicitly address what is meant by public involvement. Less than a third of the documents defined who the public is. When mechanisms for involvement were mentioned, they rarely explored which methods are most appropriate for different circumstances. Few documents discussed the need for evaluation. The authors conclude that policy statements should include more detail in the recommendations for public involvement. This would help with the application of the recommendations and lead to improvements in implementation.

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Categories: health
nature and extent of public involvement in research
journal article

Date Entered: 2010/09/28

Date Edited: 2012/12/06