title: EU Laws on Privacy in Genomic Databases and Biobanking.
abstract: Both the European Union and the Council of Europe have a bearing on privacy in genomic databases and biobanking. In terms of legislation, the processing of personal data as it relates to the right to privacy is currently largely regulated in Europe by Directive 95/46/EC, which requires that processing be "fair and lawful" and follow a set of principles, meaning that the data be processed only for stated purposes, be sufficient for the purposes of the processing, be kept only for so long as is necessary to achieve those purposes, and be kept securely and only in an identifiable state for such time as is necessary for the processing. The European privacy regime does not require the de-identification (anonymization) of personal data used in genomic databases or biobanks, and alongside this practice informed consent as well as governance and oversight mechanisms provide for the protection of genomic data.
authors.affiliation: David Townend, LL.B., M.Phil, Ph.D., is the Professor of Law and Legal Philosophy in Health, Medicine and Life Sciences, CAPHRI (School for Public Health and Primary Care), Maastricht University, NL and Visiting Professor of Health Law, University of Lincoln, UK.
authors.forename: David
authors.initials: D
authors.lastname: Townend
mesh_terms: D018070:Biological Specimen Banks; D003219:Confidentiality; D005060:Europe; D023281:Genomics; D006801:Humans; D018907:Privacy