Literature DB >> 20533799

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

Holly Longstaff1, Michael M Burgess.   

Abstract

This paper addresses the dilemmas of participant sampling and recruitment for deliberative science policy projects. Results are drawn from a deliberative public event that was held in April and May, 2007. The research objective of The BC Biobank Deliberation was to assess deliberative democracy as an approach to legitimate policy advice from a subset of British Columbians concerning the secondary use of human tissues for prospective genomic and genetic research. The overall goal was to have participants identify key values that should guide a biobank in British Columbia. This paper assesses our team's group decision-making processes concerning participant sampling for the 2007 event. Results presented here should allow the reader to critically examine our team's choices and could also be used to assist advocates of deliberative democracy and others who may wish to propose similar events in the future.

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Year:  2010        PMID: 20533799     DOI: 10.1177/0963662508097626

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


  18 in total

1.  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

2.  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

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.  Communicating risks and benefits about ethically controversial topics: the case of induced pluripotent stem (iPS) cells.

Authors:  Holly Longstaff; Michael McDonald; Jennifer Bailey
Journal:  Stem Cell Rev Rep       Date:  2013-08       Impact factor: 5.739

5.  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

6.  Hopeful and Concerned: Public Input on Building a Trustworthy Medical Information Commons.

Authors:  Patricia A Deverka; Dierdre Gilmore; Jennifer Richmond; Zachary Smith; Rikki Mangrum; Barbara A Koenig; Robert Cook-Deegan; Angela G Villanueva; Mary A Majumder; Amy L McGuire
Journal:  J Law Med Ethics       Date:  2019-03       Impact factor: 1.718

Review 7.  Ethical aspects of human biobanks: a systematic review.

Authors:  Danijela Budimir; Ozren Polasek; Ana Marusić; Ivana Kolcić; Tatijana Zemunik; Vesna Boraska; Ana Jeroncić; Mladen Boban; Harry Campbell; Igor Rudan
Journal:  Croat Med J       Date:  2011-06       Impact factor: 1.351

8.  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

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.  The ASTUTE Health study protocol: deliberative stakeholder engagements to inform implementation approaches to healthcare disinvestment.

Authors:  Amber M Watt; Janet E Hiller; Annette J Braunack-Mayer; John R Moss; Heather Buchan; Janet Wale; Dagmara E Riitano; Katherine Hodgetts; Jackie M Street; Adam G Elshaug
Journal:  Implement Sci       Date:  2012-10-22       Impact factor: 7.327

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