Power to the people: a wiki-governance model for biobanks

作者: Edward S Dove , Yann Joly , Bartha M Knoppers , None

DOI: 10.1186/GB-2012-13-5-158

关键词:

摘要: Biobanks are adopting various modes of public engagement to close the agency gap between participants and biobank builders. We propose a wiki-governance model for biobanks that harnesses Web 2.0, which gives citizens ability collaborate in governance policymaking.

参考文章(59)
Don Chalmers, Genetic research and biobanks. Methods of Molecular Biology. ,vol. 675, pp. 1- 37 ,(2011) , 10.1007/978-1-59745-423-0_1
David E Winickoff, From Benefit Sharing to Power Sharing: Partnership Governance in Population Genomics Research Center for the Study of Law and Society Jurisprudence and Social Policy Program. ,(2008)
Roberto Mangabeira Unger, What Should Legal Analysis Become ,(1996)
Mylene Deschenes, Genevieve Cardinal, Surveying the population biobankers ,(2003)
Jane Kaye, Susan Gibbons, Catherine Heeney, Andrew Smart, None, Governing biobanks: understanding the interplay between law and practice Hart. ,(2012)
Michael A. Xenos, Amy B. Becker, Ashley A. Anderson, Dominique Brossard, Dietram A. Scheufele, Stimulating Upstream Engagement: An Experimental Study of Nanotechnology Information Seeking Social Science Quarterly. ,vol. 92, pp. 1191- 1214 ,(2011) , 10.1111/J.1540-6237.2011.00814.X
Kathryn G. Hunter, Graeme T. Laurie, Involving Publics in Biobank Governance: Moving Beyond Existing Approaches Cambridge University Press. pp. 151- 177 ,(2009) , 10.1017/CBO9780511635274.009
Herbert Gottweis, George Gaskell, Johannes Starkbaum, Connecting the public with biobank research: reciprocity matters Nature Reviews Genetics. ,vol. 12, pp. 738- 739 ,(2011) , 10.1038/NRG3083