| |
Building a GE3LS Architecture (GE3LS ARC)
|
| Field of Activity: |
Society and Ethics |
| Project Leader: |
Michael M. Burgess, Peter Danielson |
| Involved Institutions: |
University of British Columbia |
| Approved Project: |
$1.9 million |
| Technology Applications: |
|
| Project Website: |
|
| Summary |
Ethical claims and disputes about genomic research and its applications influence the development of public policy and the uptake of health services and consumer products. But the acceptable ethical choice isn’t always obvious due to competing claims about health, economic, social and/or environmental effects. This project seeks to understand the social norms used by Canadians to judge genomic research. To understand how people make decisions and to learn their perspective related to salmon genomics, the research team will use consultation and computer-mediated technologies. Similar methods will be used to research decisions regarding privacy and the use of biobanks in health research. The ultimate goal of this project is to support dialogue between scientists, policy makers and the public that will enhance how public concerns are integrated into policy.
|
| More on the Science |
An objective of Genome Canada is to ‘ensure leadership in ethical, environmental, economic, legal and social issues (GE3LS) related to genomics and proteomics research.’ This project will help understand how Canadians make decisions in the face of conflicting information about genomic technologies.
Despite competing claims of economic, environmental, social or health effects, policy must be developed and applied – and that raises several questions that are surprisingly difficult to answer. When must policy or society tolerate moral differences? When is unpopular policy better than no policy? Do some people or groups have too much influence on policies? Are the interests served by policies arrived at democratically?
Part of the difficulty in answering these questions is due to the complexity and diversity of the methods used to study values and attitudes towards GE3LS. Ethical analysis traditionally evaluates the basis for making normative judgements but there is no standard correct approach.
This project will develop comparable bodies of knowledge of the social norms and ethical perspectives related to specific areas of genomic research and biotechnology, using tools developed in the previous project entitled, Democracy, Ethics and Genomics: Consultation, Deliberation and Modelling. They will use qualitative consultation methods such as focus groups, interviews and observation, and collect quantitative data through computer-mediated technologies and modelling. This project adds policy assessment by tracking the influence of public input in policy.
The knowledge bases developed by this research will be widely available through digitized collections and off-line resources enabling science educators and journalists to produce materials from the work.
National and international collaborations will also be used to compare ethical issues and perspectives across jurisdictions. Understanding the similarities and differences between research and development across areas supports the development of international trasde policy and markets as well as discussion on the benefits and risks of genome research.
|
|
|
