Ethical Norms and the International Governance of Genetic Databases and Biobanks: Findings from an International Study

• Published in: Kennedy Institute of Ethics journal Vol. 19; no. 2; pp. 101 - 124
• Main Authors: Capron, Alexander Morgan, Mauron, Alexandre, Elger, Bernice Simone, Boggio, Andrea, Ganguli-Mitra, Agomoni, Biller-Andorno, Nikola
• Format: Journal Article
• Language: English
• Published: United States Johns Hopkins University Press 01.06.2009
• Subjects: Agreements; Biobanks; Bioethics; Comparative analysis; Consent; Cultural organizations; Databases, Genetic - ethics; Databases, Genetic - standards; Databases, Genetic - trends; Ethical Analysis; Ethics; Genetic Privacy - ethics; Genetic Privacy - standards; Genetic Privacy - trends; Genetic research; Genetic Research - ethics; Genetics; Human rights; Human subjects; Humans; Informed Consent; International Cooperation; International law; International organizations; Interviews; Minority & ethnic groups; NGOs; Nongovernmental organizations; Ownership; Regulation; Research methodology; Studies; Tissue Banks - ethics; Tissue Banks - standards; Tissue Banks - trends

This article highlights major results of a study into the ethical norms and rules governing biobanks. After describing the methodology, the findings regarding four topics are presented: (1) the ownership of human biological samples held in biobanks; (2) the regulation of researchers’ use of samples...