Literature DB >> 29783499

Biobanking in British Columbia: discussions of the future of personalized medicine through deliberative public engagement.

Michael Burgess1, Kieran O'Doherty2, David Secko3.   

Abstract

In this article, we examine the role of deliberative democracy theory and practice as a means to enhance policy approaches to ethical and social issues related to biobanks. Biobanks are seen as a vital component in the rapid trend towards personalized medicine, which, while alluring, also face key issues relating to genetic discrimination, privacy, informed consent and a concern regarding how to develop and maintain the trust of citizens. We describe the case of a deliberative public engagement in which a diverse group of citizens deliberated on the appropriate values that should guide biobanking in British Columbia, Canada. We argue that the use of such methods is a necessity if we are to meaningfully consider diverse 'public interests' during the development of biobanks and thereby personalized medicine.

Entities:  

Keywords:  biobanks; deliberative democracy; personalized medicine; public engagement

Year:  2008        PMID: 29783499     DOI: 10.2217/17410541.5.3.285

Source DB:  PubMed          Journal:  Per Med        ISSN: 1741-0541            Impact factor:   2.512


  10 in total

1.  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

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

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

3.  A virtual deliberative public engagement study on heritable genome editing among South Africans: Study protocol.

Authors:  Donrich Thaldar; Beverley Townsend; Marietjie Botes; Bonginkosi Shozi; Siddharthiya Pillay
Journal:  PLoS One       Date:  2021-08-19       Impact factor: 3.240

4.  Citizen engagement initiatives in precision health in the European Union member states: a scoping review.

Authors:  Angelo Maria Pezzullo; Michele Sassano; Ilda Hoxhaj; Roberta Pastorino; Stefania Boccia
Journal:  BMJ Open       Date:  2021-07-09       Impact factor: 2.692

5.  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

6.  CJCheck Stage 1: development and testing of a checklist for reporting community juries - Delphi process and analysis of studies published in 1996-2015.

Authors:  Rae Thomas; Rebecca Sims; Chris Degeling; Jackie M Street; Stacy M Carter; Lucie Rychetnik; Jennifer A Whitty; Andrew Wilson; Paul Ward; Paul Glasziou
Journal:  Health Expect       Date:  2016-10-05       Impact factor: 3.377

7.  Community recommendations on biobank governance: Results from a deliberative community engagement in California.

Authors:  Sarah M Dry; Sarah B Garrett; Barbara A Koenig; Arleen F Brown; Michael M Burgess; Jen R Hult; Holly Longstaff; Elizabeth S Wilcox; Sigrid Karina Madrigal Contreras; Arturo Martinez; Elizabeth A Boyd; Daniel Dohan
Journal:  PLoS One       Date:  2017-02-24       Impact factor: 3.240

8.  What's Involved with Wanting to Be Involved? Comparing Expectations for Public Engagement in Health Policy across Research and Care Contexts.

Authors:  Carolyn J Barg; Fiona A Miller; Robin Z Hayeems; Yvonne Bombard; Céline Cressman; Michael Painter-Main
Journal:  Healthc Policy       Date:  2017-11

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 reported impact of public involvement in biobanks: A scoping review.

Authors:  Lidia Luna Puerta; Will Kendall; Bethan Davies; Sophie Day; Helen Ward
Journal:  Health Expect       Date:  2020-05-06       Impact factor: 3.318

  10 in total

北京卡尤迪生物科技股份有限公司 © 2022-2023.