Literature DB >> 20395688

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

Kieran C O'Doherty1, A Hawkins.   

Abstract

We begin with the premise that human tissue biobanking is associated with ethical ambiguities and regulatory uncertainty, and that public engagement is at least one important element in addressing such challenges. One is then confronted with how to achieve public engagement that is both meaningful and effective. In particular, how can public engagement on the topic of biobanking be implemented so that (a) it is perceived broadly as legitimate and (b) the results of the engagement are relevant and useful to the institutional and regulatory context? In this paper we build on previous work that has addressed the former point and focus primarily on the latter. We argue that one way to increase the likelihood of results of public engagement being taken up in policy is through framing the issues that are deliberated by members of the public based in part on the practical policy questions for which input is sought. In this approach, we move discussion on the social and ethical implications of biobanking from abstract principles, to their consideration in the context of local biobanking practices. This is illustrated using a practical example involving a public engagement conducted to inform institutional policy for biobanking in British Columbia, Canada. Copyright 2010 S. Karger AG, Basel.

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Year:  2010        PMID: 20395688      PMCID: PMC2874727          DOI: 10.1159/000279621

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


  15 in total

1.  Recruiting for representation in public deliberation on the ethics of biobanks.

Authors:  Holly Longstaff; Michael M Burgess
Journal:  Public Underst Sci       Date:  2010-03

Review 2.  Deliberations about deliberative methods: issues in the design and evaluation of public participation processes.

Authors:  Julia Abelson; Pierre-Gerlier Forest; John Eyles; Patricia Smith; Elisabeth Martin; Francois-Pierre Gauvin
Journal:  Soc Sci Med       Date:  2003-07       Impact factor: 4.634

3.  In the public interest: assessing expert and stakeholder influence in public deliberation about biobanks.

Authors:  Samantha MacLean; Michael M Burgess
Journal:  Public Underst Sci       Date:  2010-07

Review 4.  The social and ethical issues of post-genomic human biobanks.

Authors:  Anne Cambon-Thomsen
Journal:  Nat Rev Genet       Date:  2004-11       Impact factor: 53.242

5.  Public culture and public understanding of genetics: a focus group study.

Authors:  Benjamin R Bates
Journal:  Public Underst Sci       Date:  2005-01

6.  Community engagement in genetic research: results of the first public consultation for the Quebec CARTaGENE project.

Authors:  Béatrice Godard; Jennifer Marshall; Claude Laberge
Journal:  Community Genet       Date:  2007

Review 7.  National population-based biobanks for genetic research.

Authors:  Helen Swede; Carol L Stone; Alyssa R Norwood
Journal:  Genet Med       Date:  2007-03       Impact factor: 8.822

8.  Biobanking for epidemiological research and public health.

Authors:  Angela M Brand; Nicole M Probst-Hensch
Journal:  Pathobiology       Date:  2007       Impact factor: 4.342

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

Authors:  K C O'Doherty; M M Burgess
Journal:  Public Health Genomics       Date:  2008-10-31       Impact factor: 2.000

10.  Community consultation and communication for a population-based DNA biobank: the Marshfield clinic personalized medicine research project.

Authors:  Catherine A McCarty; Donna Chapman-Stone; Teresa Derfus; Philip F Giampietro; Norman Fost
Journal:  Am J Med Genet A       Date:  2008-12-01       Impact factor: 2.802

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  34 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

Review 2.  Health professionals' opinions on supporting a cancer biobank: identification of barriers to combat biobanking pitfalls.

Authors:  Nicole J Caixeiro; Hei Lan Byun; Joseph Descallar; Janelle V Levesque; Paul de Souza; Cheok Soon Lee
Journal:  Eur J Hum Genet       Date:  2015-09-02       Impact factor: 4.246

3.  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

4.  Reflexive governance in biobanking: on the value of policy led approaches and the need to recognise the limits of law.

Authors:  Graeme Laurie
Journal:  Hum Genet       Date:  2011-07-16       Impact factor: 4.132

5.  Ethical, Legal, and Social Issues (ELSI) in Clinical Genetics Research.

Authors:  Daryl Pullman; Holly Etchegary
Journal:  Methods Mol Biol       Date:  2021

6.  Contrasting the ethical perspectives of biospecimen research among individuals with familial risk for hereditary cancer and biomedical researchers: implications for researcher training.

Authors:  Gwendolyn P Quinn; Alexis Koskan; Ivana Sehovic; Tuya Pal; Cathy Meade; Clement K Gwede
Journal:  Genet Test Mol Biomarkers       Date:  2014-04-30

7.  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

8.  Community engagement in US biobanking: multiplicity of meaning and method.

Authors:  K M Haldeman; R J Cadigan; A Davis; A Goldenberg; G E Henderson; D Lassiter; E Reavely
Journal:  Public Health Genomics       Date:  2014-02-19       Impact factor: 2.000

9.  A SOCIAL NETWORK ANALYSIS APPROACH TO UNDERSTAND CHANGES IN A CANCER DISPARITIES COMMUNITY PARTNERSHIP NETWORK.

Authors:  John S Luque; Dinorah Martinez Tyson; Shalanda A Bynum; Shalewa Noel-Thomas; Kristen J Wells; Susan T Vadaparampil; Clement K Gwede; Cathy D Meade
Journal:  Ann Anthropol Pract       Date:  2011-11-01

10.  Consulting the community: public expectations and attitudes about genetics research.

Authors:  Holly Etchegary; Jane Green; Elizabeth Dicks; Daryl Pullman; Catherine Street; Patrick Parfrey
Journal:  Eur J Hum Genet       Date:  2013-04-17       Impact factor: 4.246

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