Key Points
• Bioethical government advisory committees have profound influence on political decision-making on gene technology issues, concerning not only patients with genetically related diseases, but also, potentially, the whole society.
• Decision-making on issues concerning all society should be democratically legitimate in all aspects, including the work of government advisory committees.
• Democratic legitimacy of expert advice is desirable not only for the democratic values per se, but also for the quality of political decisions.
• In the case of PGD legislation in Sweden, the national government advisory committee functioned as a bridge between political representatives, specialist civil servants, and scientific experts, but the connection with public opinion was more or less absent.
• Had the advisory committee worked more openly and allowed a multiplicity of perspectives being heard, the democratic and quality aspects in this legislation process would have been strengthened.
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Hedlund, M. (2010). Democratic Expert Influence Through Bioethical Advisory Committees? The Case of PGD Legislation in Sweden. In: Kristoffersson, U., Schmidtke, J., Cassiman, J. (eds) Quality Issues in Clinical Genetic Services. Springer, Dordrecht. https://doi.org/10.1007/978-90-481-3919-4_24
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