Literature DB >> 24434712

From 'trust us' to participatory governance: Deliberative publics and science policy.

Michael M Burgess1.   

Abstract

The last 20 years have seen a shift from the view that publics need to be educated so that they trust science and its governance to the recognition that publics possess important local knowledge and the capacity to understand technical information sufficiently to participate in policy decisions. There are now a variety of approaches to increasing the role of publics and advocacy groups in the policy and governance of science and biotechnology. This article considers recent experiences that demonstrate that it is possible to bring together those with policy making responsibility and diverse publics to co-produce policy and standards of practice that are technically informed, incorporate wide social perspectives and explicitly involve publics in key decisions. Further, the process of deliberation involving publics is capable of being incorporated into governance structures to enhance the capacity to respond to emerging issues with levels of public engagement that are proportionate to the issues.

Keywords:  Biobank governance; biotechnology governance; ethics; health policy; public participation; public participation in policy; public understanding of science; science policy

Mesh:

Year:  2014        PMID: 24434712     DOI: 10.1177/0963662512472160

Source DB:  PubMed          Journal:  Public Underst Sci        ISSN: 0963-6625


  26 in total

1.  EngageUC: Developing an Efficient and Ethical Approach to Biobanking Research at the University of California.

Authors:  Sarah B Garrett; Barbara A Koenig; Arleen Brown; Jen R Hult; Elizabeth A Boyd; Sarah Dry; Daniel Dohan
Journal:  Clin Transl Sci       Date:  2015-01-10       Impact factor: 4.689

2.  Deliberation to Promote Shared Sovereignty in Health Research: Four Questions to Clarify Goals, Methods, and Scope.

Authors:  Jantina de Vries; Syntia Nchangwi Munung; Paulina Tindana
Journal:  Am J Bioeth       Date:  2016-10       Impact factor: 11.229

3.  The Sangre Por Salud Biobank: Facilitating Genetic Research in an Underrepresented Latino Community.

Authors:  Gabriel Shaibi; Davinder Singh; Eleanna De Filippis; Valentina Hernandez; Bill Rosenfeld; Essen Otu; Gregorio Montes de Oca; Sharon Levey; Carmen Radecki Breitkopf; Richard Sharp; Janet Olson; James Cerhan; Stephen Thibodeau; Erin Winkler; Lawrence Mandarino
Journal:  Public Health Genomics       Date:  2016-07-05       Impact factor: 2.000

4.  Layperson Views about the Design and Evaluation of Decision Aids: A Public Deliberation.

Authors:  Peter H Schwartz; Kieran C O'Doherty; Colene Bentley; Karen K Schmidt; Michael M Burgess
Journal:  Med Decis Making       Date:  2021-04-05       Impact factor: 2.583

5.  Current Status and Future Challenges of Biobank Research in Malaysia.

Authors:  Latifah Amin; Angelina Olesen; Zurina Mahadi; Maznah Ibrahim
Journal:  Asian Bioeth Rev       Date:  2021-03-31

6.  Genomics governance: advancing justice, fairness and equity through the lens of the African communitarian ethic of Ubuntu.

Authors:  Nchangwi Syntia Munung; Jantina de Vries; Bridget Pratt
Journal:  Med Health Care Philos       Date:  2021-04-02

7.  Public's attitudes on participation in a biobank for research: an Italian survey.

Authors:  Corinna Porteri; Patrizio Pasqualetti; Elena Togni; Michael Parker
Journal:  BMC Med Ethics       Date:  2014-11-26       Impact factor: 2.652

Review 8.  If you build it, they will come: unintended future uses of organised health data collections.

Authors:  Kieran C O'Doherty; Emily Christofides; Jeffery Yen; Heidi Beate Bentzen; Wylie Burke; Nina Hallowell; Barbara A Koenig; Donald J Willison
Journal:  BMC Med Ethics       Date:  2016-09-06       Impact factor: 2.652

9.  Sharing linked data sets for research: results from a deliberative public engagement event in British Columbia, Canada.

Authors:  Jack Teng; Colene Bentley; Michael M Burgess; Kieran C O'Doherty; Kimberlyn M McGrail
Journal:  Int J Popul Data Sci       Date:  2019-05-07

10.  Collective agency and the concept of 'public' in public involvement: A practice-oriented analysis.

Authors:  Tobias Hainz; Sabine Bossert; Daniel Strech
Journal:  BMC Med Ethics       Date:  2016-01-05       Impact factor: 2.652

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