Abstract: In this article, the authors review the reported public involvement in 96 human genomics projects, stored on a database hosted by the Global Alliance for Genomics and Health. The information about the projects was obtained from reports on websites in the public domain. Only a third of all projects reported public involvement of any kind (32/96, 33%). Those reporting public involvement used different approaches for different tasks. Some exceptional examples involved the public throughout all stages of the research cycle. Three projects reported on impact. These findings suggest potential benefits from more public involvement in human genomics research worldwide, and that improved reporting and evaluation would help develop best practice.
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Categories: health nature and extent of public involvement in research journal article
Date Entered: 2019/04/27
Date Edited: 2019/04/27