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Benefit Sharing and Public Trust in Genetic Research
From Iceland to Tonga, from Taiwan to Canada, genetic databases and research biobanks are at various stages of construction. Some are already in operation, some are slowly being established, and some are little more than abandoned blueprints and forgotten piles of documents. Plans to establish genetic databases and biobanks have resulted in furious controversies, extensive public consultations and, in some places, merely quiet concern.
This volume aims at presenting a wide variety of viewpoints on issues related to genetic databases and biobanks. The authors show that there is a lively ongoing debate on ethical and legal issues concerning, for example, privacy, autonomy, consent, social justice, benefit-sharing and genetic discrimination. The public discourse on genetics and databases gets special attention, with analyses of the media discourse and of public views and perceptions.
The papers in this volume were contributed to the International ELSAGEN Conference on Ethical, Legal and Social Aspects of Human Genetic Databases, held in Reykjavik, Iceland, on August 25-28, 2004.