Democratic expert influence through bioethical advisory committees? the case of PGD legislation in Sweden

Abstract

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.