The governance of genomic research: the case studies of Iceland and Newfoundland and Labrador

Salman, Bora (2020) The governance of genomic research: the case studies of Iceland and Newfoundland and Labrador. Masters thesis, Memorial University of Newfoundland.

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Abstract

Genomic research and databases came into prominence following the large- scale scientific research and investments into human genetics in the 1990s. Genome-based knowledge, which promises new diagnostic and therapeutic techniques, also produces political, economic, ethical, social, and regulatory dilemmas. The thesis examines the governmental, techno-scientific, and economic power-relations lodged in genomic research. The thesis focuses on Iceland and Newfoundland and Labrador as the cases, which attracted venture capital investments and research because genetically homogenous populations are ideal for conducting genetic research to detect the roots of the diseases. With a Foucauldian lens, the power relations between the subjects including, biotechnology and pharmaceutical companies, venture capitalists, patients’ groups, and state, are analyzed in parallel with neoliberal governance model. Biotechnology companies, investors, and governments play significant roles for supporting the biotech industry. Discourses of rational self-interest and personal responsibility are deployed, in particular cases national identity and ethnic pride are also articulated with the emphasis on the rational self. These discourses mask not only ethical concerns, but also power relations between the parties. The comparison of the governance alternatives in these two cases tries to offer insights regarding neoliberal governance model, which mobilizes individual conduct in line with political economic ends.

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