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Assessing Deliberative Design of Public Input on British Columbia Biobanks

  • Michael M. BurgessEmail author
  • Holly Longstaff
  • Kieran O’Doherty
Chapter
Part of the The International Library of Ethics, Law and Technology book series (ELTE, volume 16)

Abstract

This chapter critically assesses the public deliberative methodologies used in British Columbia, which involved deliberative events spanning two weekends with 20–25 citizen-deliberators. The development of public and private genetic databases (biobanks) strains dominant understandings of health information privacy, consent to research participation, and responsibilities of the state for public health. This chapter presents an example of incorporating citizens’ views into the regulatory and institutional design of biobanks.

Keywords

Deliberation Biobanks Public engagement Informed consent Policy Research ethics 

Notes

Acknowledgments

This research is part of the Genome Canada and Genome BC funded project, “Building a GE3LS Architecture” hosted at the University of British Columbia’s W. Maurice Young Centre for Applied Ethics (Principal Investigators M. Burgess, P. Danielson; Co-Investigators E. Levy, D. Weary). Additional funding for the BC Biobanking Deliberation was provided by Canadian Institutes of Health Research (CIHR) Ethics Office, CIHR Institute for Genetics, Canadian Biotechnology Secretariat, Canadian Tumor Repository Network, BC BioLibrary: Banking for Health (a MSFHR Technology/Methodology Platform), BC Cancer Agency Tumor Tissue Repository, Better Biomarkers of Acute and Chronic Allograft Rejection (Genome Canada), The James Hogg iCAPTURE Centre (St. Paul’s Hospital). The BC BioLibrary deliberation was also supported by a Genome BC in a Strategic Opportunities Fund competition.

The research described here as been developed by the “face-to-face” research team: D. Badulescu, M. Burgess, H. Davidson, D. Hartell, D. Laforce, H. Longstaff, S MacLean, K. O’Doherty, N. Preto, D. Secko, K. Taylor, H. Walmsley, E. Wilcox, with support from M. Warren. Financial support for the biobanks public deliberation was also supported by BC BioLibrary (MSFHR Platform), CIHR Ethics Office and Institute of Genetics, Canadian Biotechnology Secretariat, James Hogg iCAPTURE Centre, Canadian Tumour Repository Network and the BC Cancer Agency Tumour Tissue Repository. See http://gels.ethics.ubc.ca:8213/ge3ls-arch/face-to-face

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Copyright information

© Springer International Publishing Switzerland 2016

Authors and Affiliations

  • Michael M. Burgess
    • 1
    Email author
  • Holly Longstaff
    • 2
    • 3
  • Kieran O’Doherty
    • 4
  1. 1.W. Maurice Young Centre for Applied Ethics and Department of Medical GeneticsUniversity of British ColumbiaVancouverCanada
  2. 2.Office of Research EthicsSimon Fraser UniversityBurnabyCanada
  3. 3.Partner, Engage Associates Consulting GroupVancouverCanada
  4. 4.Department of PsychologyUniversity of GuelphGuelphCanada

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