title: Regulating Privacy and Biobanks in the Netherlands.
abstract: The Netherlands does not have any specific legislation pertaining to human biological materials and data collection by biobanks. Instead, these issues are governed by a patchwork of laws, codes of practices, and other ethical instruments, where special emphasis is given to the right to privacy and self-determination. While draft legislation for biobanking was scheduled to enter into force in 2007, as of mid-2015 such legislation was still under consideration, with the intent that it would focus particularly on individual self-determination, the interests of research, the use of bodily materials collected by biobanks for criminal law purposes, and dilemmas around results that are clinically relevant for biobank participants. Under the current framework, the amount of privacy protection afforded to data is linked to its level of identifiability. International sharing of personal data to non-EU/European Economic Area countries is allowed if these countries provide adequate protection.
authors.affiliation: Aart C. Hendriks, Ph.D. (Amsterdam University), is a professor in Health Law at Leiden University and legal advisor to the Royal Dutch Medical Association (KNMG), Utrecht, the Netherlands. Rachèl E. van Hellemondt, Ph.D. (Leiden University), is a researcher in the field of medicine, ethics and law at the Leiden University Medical Centre, the Netherlands.
authors.forename: Aart C
authors.initials: AC
authors.lastname: Hendriks
authors.affiliation: Aart C. Hendriks, Ph.D. (Amsterdam University), is a professor in Health Law at Leiden University and legal advisor to the Royal Dutch Medical Association (KNMG), Utrecht, the Netherlands. Rachèl E. van Hellemondt, Ph.D. (Leiden University), is a researcher in the field of medicine, ethics and law at the Leiden University Medical Centre, the Netherlands.
authors.forename: Rachèl E
authors.initials: RE
authors.lastname: van Hellemondt
mesh_terms: D018070:Biological Specimen Banks; D005060:Europe; D036281:Genetic Research; D006801:Humans; D009426:Netherlands; D018907:Privacy