Literature DB >> 19367089

Engaging the public on biobanks: outcomes of the BC biobank deliberation.

K C O'Doherty1, M M Burgess.   

Abstract

In April 2007, a research team led by M. Burgess conducted a public engagement, the BC Biobank Deliberation, focused on the issue of biobanks. The project was motivated by an observation that current policy approaches to social and ethical issues surrounding biobanks manifest certain democratic deficits. The public engagement was informed by political theory on deliberative democracy with the aim of informing biobanking policies, in particular in British Columbia (BC), Canada. The purpose of this paper is to provide a comprehensive outline of the conclusions reached by the deliberants (both recommendations based on consensus and issues that emerged as persistent disagreements). However, the process whereby the specific conclusions to be delivered to policy makers are identified is not a self-evident process. We thus provide a critical analysis of how the results of a public engagement such as the BC Biobank Deliberation can be conceptualized given the context of a large qualitative data set and an imperative to provide useful information to policy makers, while honoring the mandate under which deliberants were recruited. In particular, we make the case for distinguishing between deliberative outputs of public engagement and analytical outputs that are the product of social scientific analyses of such engagements. Copyright 2008 S. Karger AG, Basel.

Entities:  

Mesh:

Year:  2008        PMID: 19367089     DOI: 10.1159/000167801

Source DB:  PubMed          Journal:  Public Health Genomics        ISSN: 1662-4246            Impact factor:   2.000


  49 in total

Review 1.  Biobanks: importance, implications and opportunities for genetic counselors.

Authors:  Alice K Hawkins
Journal:  J Genet Couns       Date:  2010-08-03       Impact factor: 2.537

2.  Structuring public engagement for effective input in policy development on human tissue biobanking.

Authors:  Kieran C O'Doherty; A Hawkins
Journal:  Public Health Genomics       Date:  2010-04-15       Impact factor: 2.000

3.  Integrating Public Health and Deliberative Public Bioethics: Lessons from the Human Genome Project Ethical, Legal, and Social Implications Program.

Authors:  Karen M Meagher; Lisa M Lee
Journal:  Public Health Rep       Date:  2016 Jan-Feb       Impact factor: 2.792

4.  Beyond Consent: Building Trusting Relationships With Diverse Populations in Precision Medicine Research.

Authors:  Stephanie A Kraft; Mildred K Cho; Katherine Gillespie; Meghan Halley; Nina Varsava; Kelly E Ormond; Harold S Luft; Benjamin S Wilfond; Sandra Soo-Jin Lee
Journal:  Am J Bioeth       Date:  2018-04       Impact factor: 11.229

5.  Blueprint for a deliberative public forum on biobanking policy: were theoretical principles achievable in practice?

Authors:  Caron Molster; Susannah Maxwell; Leanne Youngs; Gaenor Kyne; Fiona Hope; Hugh Dawkins; Peter O'Leary
Journal:  Health Expect       Date:  2011-06-07       Impact factor: 3.377

6.  A framework for biobank sustainability.

Authors:  Peter H Watson; Sara Y Nussbeck; Candace Carter; Sheila O'Donoghue; Stefanie Cheah; Lise A M Matzke; Rebecca O Barnes; John Bartlett; Jane Carpenter; William E Grizzle; Randal N Johnston; Anne-Marie Mes-Masson; Leigh Murphy; Katherine Sexton; Lois Shepherd; Daniel Simeon-Dubach; Nikolajs Zeps; Brent Schacter
Journal:  Biopreserv Biobank       Date:  2014-02       Impact factor: 2.300

7.  Biobank participation and returning research results: perspectives from a deliberative engagement in South Side Chicago.

Authors:  Amy A Lemke; Colin Halverson; Lainie Friedman Ross
Journal:  Am J Med Genet A       Date:  2012-03-21       Impact factor: 2.802

Review 8.  Neurotalk: improving the communication of neuroscience research.

Authors:  Judy Illes; Mary Anne Moser; Jennifer B McCormick; Eric Racine; Sandra Blakeslee; Arthur Caplan; Erika Check Hayden; Jay Ingram; Tiffany Lohwater; Peter McKnight; Christie Nicholson; Anthony Phillips; Kevin D Sauvé; Elaine Snell; Samuel Weiss
Journal:  Nat Rev Neurosci       Date:  2009-12-02       Impact factor: 34.870

9.  Including the public in pandemic planning: a deliberative approach.

Authors:  Annette J Braunack-Mayer; Jackie M Street; Wendy A Rogers; Rodney Givney; John R Moss; Janet E Hiller
Journal:  BMC Public Health       Date:  2010-08-19       Impact factor: 3.295

10.  Deliberations with American Indian and Alaska Native People about the Ethics of Genomics: An Adapted Model of Deliberation Used with Three Tribal Communities in the United States.

Authors:  Erika Blacksher; Vanessa Y Hiratsuka; Jessica W Blanchard; Justin R Lund; Justin Reedy; Julie A Beans; Bobby Saunkeah; Micheal Peercy; Christie Byars; Joseph Yracheta; Krystal S Tsosie; Marcia O'Leary; Guthrie Ducheneaux; Paul G Spicer
Journal:  AJOB Empir Bioeth       Date:  2021-06-14
View more

北京卡尤迪生物科技股份有限公司 © 2022-2023.