The status of genetic material and genetic information in The Netherlands.
The moral status of genetic material and information, and the ethics of controlling and manipulating them, is a topic of hot debate in many European countries, including The Netherlands. That heat is due partly to the complexity of the topic, and partly to researchers' fear that their investigations will be hampered by restrictions on the use of personal data or body material. But there is little doubt that manifold diverging interpretations about the status of the human body, body materials, and personal information in Dutch law, written and unwritten, contribute to the intensity of the debates. This article intends to structure the debate by creating more clarity at the conceptual level. By carefully examining relevant articles of the Constitution and Civil Codes, as well as policy documents and authoritative publications, notably in reference to prominent legal concepts such as property, ownership and privacy, and answer should be provided to the following crucial question: is the status of genetic material and information in any sense special in comparison with other body parts and other kinds of information about a person? This paper first discusses the status of human body materials and personal information in general, and then continues with a more specific discussion about the status of genetic material and information. It concludes that the Dutch legislature had carefully avoided (or not felt the need to employ) the concept of ownership in regulating biomedical research; rather, privacy is found to be the prime regulatory concept.
de Witte
J I
JI
Centre for Ethics, University of Nijmegen, The Netherlands.
Welie
J V
JV
D003219:Confidentiality / Q000331:legislation & jurisprudence; D004992:Ethics, Medical; D015723:Gene Library; D005823:Genetics / Q000331:legislation & jurisprudence* / Q000592:standards; D006805:Human Experimentation; D006801:Humans; D007255:Information Services / Q000331:legislation & jurisprudence; D007258:Informed Consent / Q000331:legislation & jurisprudence; D009426:Netherlands; D010067:Ownership / Q000331:legislation & jurisprudence; D010344:Patient Advocacy / Q000331:legislation & jurisprudence*; D018907:Privacy / Q000331:legislation & jurisprudence; D014019:Tissue Donors / Q000331:legislation & jurisprudence