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Governance in new genetics and public participation: the case of stem cell research

This paper presents a critical review of contemporary international literature on new forms of governance and public engagement, and focuses on cutting-edge health biosciences in the fields of social and public health. New genetics confronts individuals, communities and national States with a redefinition of conventional assumptions on the nature of life and of relationships between living beings. In industrialized countries, these developments have contributed to reorganize relationships between citizens, scientists and policymakers, and have led to the design of public policy strategies that, simultaneously, promote the engagement of the general public and exclude some of their contributions from regulatory frameworks. The main aim of this paper is to discuss selected theoretical concepts on these topics, as an incentive, on the one hand, for a reflection on the evolution of theories and, on the other, for the dissemination of contributions eventually relevant to public participation in the Brazilian context. Examples are provided on the case of stem cell research and therapy (SCR), based on data from an ongoing research project coordinated by the author. Towards the end, the text analyzes the public consultation processes on stem cell research developed in Brazil and their limited inclusion of voices from civil society organizations.

governance; public policy; public engagement; public participation; stem cell research; cellular therapy


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