Democracy, Ethics and Genomics: Consultation, Deliberation and Modelling
Generating solutions
- A novel methodology to identify issues related to public engagement, biobanks, and salmon genomics, and a better understanding of what is needed for carefully constructed public.
- Engagement
- Number of research personnel employed by the project: 13
- Number of peer reviewed publications published: 38 papers and 95 invited presentations.
- Resources generated: approaches have been applied to health policy analyses, and
- team members have been invited to provide federal government
- policy advice through interviews and participation in workshops.
Status
Competition
Genome Centre(s)
GE3LS
Project Leader(s)
- Michael Burgess,
- University of British Columbia
Fiscal Year Project Launched
Project Description
This is a stand-alone GE3LS project.
Public support is fundamental to the continued growth of genomic research in all western democracies and to society’s general acceptance of the products of that research. Both of these factors – growth and acceptance – directly affect the economic, industrial and social benefits that can be realized through genomic research.
Our project brought together researchers in British Columbia and Canada, Australia, New Zealand, the United Kingdom and the United States, as well as the public, interest groups and stakeholders.
The research tested and compared three methods for incorporating a broader social perspective in policy development directed at genomic research and commercialization:
1. Consultation: focus and discussion group methods to seek public perspectives on social and ethical issues related to genomics, salmon genomics and biobanking, and on the role of the public in governing genomics.
2. Deliberation: a series of academic discussions and final workshop, which included James Fishkin, the leading practitioner of deliberative democracy, culminating in a paper for the special issue journal, “Integrated Assessment”, one of the project’s final outputs.
3. Modelling: a graduate seminar course on the ethics of genomics technology offered through the W. Maurice Young Centre for Applied Ethics, UBC. The resulting online surveys focused on genomic technology applied to food and human health, and the ethical problems that arise from their growing use.
An international expert workshop was held to evaluate the project’s approaches to democracy, ethics and genomics. Select approaches have been applied to health policy analyses, and team members have been invited to provide federal government policy advice through interviews and participation in workshops. The project has led to a more efficient identification of issues related to public engagement, biobanks, and salmon genomics, and a better understanding of what is needed for carefully constructed public engagement.