Biobanking: International Norms

• Published in: The Journal of law, medicine & ethics Vol. 33; no. 1; pp. 7 - 14
• Main Author: Knoppers, Bartha Maria
• Format: Journal Article
• Language: English
• Published: Oxford, UK Blackwell Publishing Ltd 22.03.2005; SAGE Publications; Sage Publications, Inc; Cambridge University Press
• Subjects: Biotechnology; Commercialization; DNA identification; DNA testing; European Union; Evaluation; Gene banks; Genetic research; Genome, Human; Government regulation; Human genome; Human Genome Project; Humans; Internationality; Laws, regulations and rules; Terminology as Topic; Tissue banks; Tissue Banks - ethics; Tissue Banks - trends; Genetics and Reproduction; Biomedical and Behavioral Research
• ISSN: 1073-1105; 1748-720X
• DOI: 10.1111/j.1748-720X.2005.tb00205.x

While the socio-ethical and legal issues surrounding clinical genetics have long been the subject of international interest, the thorny questions of genetic research and biobanking are more recent. Add to this the fact that national guidelines and laws usually precede international policymaking, and the delay in international approaches is understandable. In that regard, the United Nations Educational, Scientific and Cultural Organization’s 1997 Universal Declaration on the Human Genome and Human Rights is unique in its prospective guidance on genetic research. Also, it is in the very nature of international normative instruments to be general, except on specific issues considered to be in the interest of humanity, such as research into human reproductive cloning or access to AIDS drugs.