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 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. Our team did foundational work on earlier translation challenges with its Genomics: Ethics, Economic, Environmental, Law and Society (GE3LS) project (2001-5). We now propose to investigate 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 our 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.
 

Robyn Hyde-Lay, Project Manager
rhyde-lay@genomealberta.ca