Translating Science: Genomics & Health Systems www.ge3lsalberta.ca

Commercialization of genomics research promises many benefits to society, while at the same time raising ethical, environmental, social and legal challenges, some of which have aroused considerable public concern. The nature of these concerns, the regulatory responses and the structures and process for managing the innovation process are the focus of the GE3LS program

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GE3LS Research at Genome Alberta

The mapping of the human genome and the genomes of many other animals, plants, and microorganisms has ushered in the genomic era. Yet, “the challenge of establishing robust paths from genomic information to improved human health remains immense,” according to Francis Collins, co-leader of the Human Genome Project.

This research project investigates the broad question: How is genomics knowledge translated in health systems and what are the consequent policy implications?

Processes of translation involve the production of scientific knowledge, the protection of such knowledge through forms of intellectual property, and, the interpretation, application, and commercialization of such knowledge.

“Health systems” include health research networks that contribute to research and technological innovation; production systems (e.g., agricultural and pharmaceutical systems), social and health delivery systems that influence and oversee nutrition and health; regulatory and court systems for decision-making, monitoring and control; and groups of end-users (e.g. citizens) and other relevant stakeholders.

The Genome Alberta GE3LS team did foundational work on earlier translation challenges with their Genome funded project, Genomics: Ethics, Economic, Environmental, Law and Society (GE3LS), (2001-5). The team proposes to investigate the following three interrelated questions:

1. How is knowledge translated through intellectual property systems?
   While intellectual property rights (e.g. patents) have created incentives for public and private research, they also have created challenges for application and use of genomic innovations by a number of groups, including public health delivery systems and more disadvantaged communities such as developing countries and indigenous communities;
2. How is genomics represented in the public sphere?
   The ability of society to effectively develop and use genomics knowledge is fundamentally influenced by the perspectives individuals and groups have about the risks, benefits, and ethical challenges that the new technologies offer. This theme examines the ways different groups frame their opinions about genomics and the implications for consumers, citizens, policy makers, and other stakeholders; and
3. What are the policy implications of genomics translation?
   At root, genomics translation is a challenge of governance. Governance relates to how decisions are made, who participates, whose interests and what criteria are taken into account, and how decision-makers are held accountable. This theme examines the policy implications of a wide range of private, collective and hybrid public-private partnerships that are now instrumental in governing knowledge translation.

In summary, this project will enhance the understanding of how genomics technologies are translated and used in health systems, the socio-ethical and legal challenges around such processes, and approaches for dealing with these challenges. The expected outcomes for Canada are technologies that are more socially robust and sustainable.

Timothy Caulfield, Project Leader and Principal Investigator
Health Law Institute, University of Alberta

Edna Einsiedel, Project Leader and Principal Investigator
University of Calgary

Peter Phillips, Principal Investigator
University of Saskatchewan

Michele Veeman, Principal Investigator
University of Alberta

Robyn Hyde-Lay, Project Manager
Genome Alberta