Translating Science: Genomics and Health Systems
TERM: April 2006-December 2010
AGENCY: Genome Canada/GenomeAlberta
PROJECT LEADERS: Professor Timothy Caulfield (U of A), Dr. Edna Einsiedel (U of C), Dr. Peter Phillips (U of Sask.) and Dr. Michele Veeman (U of A)
FUNDING AMOUNT: $2,780,082
This projected investigated the broad question: How is genomics knowledge translated in health systems and what are the consequent policy implications? The Genome Alberta GE3LS team – Caulfield, Einsiedel, Phillips and Veeman - addressed this question through their investigation of how knowledge is translated through intellectual property systems (Theme 1), how genomics is represented in the public sphere (Theme 2), and what the policy implications of genomics translation are (Theme 3).
Theme 1: Intellectual Property and Knowledge Translation
Both Caulfield and Phillips led the project’s exploration of evolving models of IP translation. Caulfield conducted extensive research investigating the benefits and risks associated with gene patents, assessing their impact on innovation, commercialization and health care delivery. This work engaged numerous policy makers and produced evidence based recommendations. It also helped inform related survey and interview work exploring researcher impressions of gene patents, in addition to his team’s analysis of current policies and practices utilized by a number of Canadian universities regarding the commercialization of biomedical research.
Phillips’ team engaged in an intensive research effort to understand the role of public private partnerships (PPP) and innovation systems in the development, protection, and exploitation of scientifically derived knowledge in the global agri-food system. As well, his team investigated the policies and practices of access and benefits (ABS) sharing of traditional knowledge, producing a major framing study and a series of reports examining the international policy system, the policies and practices of Canada’s First Nations community, and the theoretical and practical efforts to advance and manage traditional knowledge (TK).
Theme 2: Representations of Genomics in the Public Sphere
Caulfield, Einsiedel and Veeman examined how different groups framed their opinions about genomics and the implications these had for policy making. Veeman completed a case study on plant molecular farming (PMF), which included a Canada-wide survey probing people’s assessments of the benefits and risks associated with this technology. Respondents also completed a stated choice experiment that revealed their preferences for public research investments in various areas of PMF research.
Caulfield and Einsiedel’s work examined popular representations, public perceptions and policy implications of genetic technologies. This included significant survey research exploring, for example, issues to do with transgenic animals, nanotechnology and stem cells, in addition to the Alberta public’s knowledge and views regarding genetic testing. Other work undertaken includes Caulfield’s critique of select genetic policies, his team’s systematic media analyses of various emerging technologies, in addition to his co-hosting of a number of events. As well, Einsiedel’s team investigated the commercial framing of 24 Direct to Consumer (DTC) genetic testing companies, in addition to analyzing a number of their informed consent processes and privacy provisions. Her team also co-hosted an important symposium, the output of which is the edited volume Publics and Emerging Technologies: Cultures, Contexts and Challenges (in press).
Theme 3: Policy and Governance Implications of Genomics Translation
Research investigating the policy and governance implications of genomics translation was significant, and involved all team leaders. Caulfield, Einsiedel, Phillips and Veeman all contributed to an analysis of the international regulatory environment, through their critique of relevant laws, policies and regulations of several genomic technologies, and interviews with key policy makers, stakeholders, regulatory experts etc., and hosting of key events. They also collectively collaborated with the BC GE3LS team on a number of joint activities profiling related policy work. Other significant research was led individually. Einsiedel’s, for example, reconvened her 1999 GM Food Citizen’s Panel, an initiative that was co-funded by Agriculture and Agri-Food Canada, as this organization sought public input for the development of regulations for the commercialization of PMF. Her team also conducted interviews exploring a broad range of emerging technologies and the role of public engagement in the development of biotechnology. Veeman’s work focused on food operations, involving both an assessment of the development of international standards related to food biotechnology, and a survey assessing how Alberta food processors rank and respond to a number of food safety issues. She also led a Canada wide survey exploring Canadians’ views, stated preferences and trade-offs for a functional food product. Caulfield’s research under this theme focused on resource allocation, with research activities including a critique of resource allocation funding models, technology assessment policies and procedures, and interviews with members of the genetics community and public. As well, he hosted the The Age of Personalized Genomics Conference, an event that explored issues regarding the assessment and integration of personalized genomics into health care. Lastly, Phillips team conducted extensive work on the governance of knowledge translation, which produced a useful and tested framework and set of methodologies for managing and making choices related to investments, regulatory regimes, social networks and commercial systems.