The status of genetic material and genetic information in The Netherlands

Autor: Jos V. M. Welie, Joke I. de Witte
Jazyk: angličtina
Rok vydání: 1997
Předmět:
Health (social science)
Property (philosophy)
Naar een antropologische fundering van de gezondheidszorgethiek [Ziek-zijn en mens-zijn]
Informed Consent/legislation & jurisprudence
media_common.quotation_subject
Legislation
Towards an Anthropological Foundation of Health Care Ethics [Illness and existence]
Patient Advocacy
law.invention
Information protection policy
History and Philosophy of Science
law
Confidentiality/legislation & jurisprudence
Medical
Genetics
Information Services/legislation & jurisprudence
Humans
Confidentiality
Ethics
Medical
Sociology
media_common
Gene Library
Netherlands
Information Services
Ethics
Informed Consent
Genetics/legislation & jurisprudence
Tissue Donors/legislation & jurisprudence
business.industry
Constitution
Ownership
Legislature
Public relations
Tissue Donors
Patient Advocacy/legislation & jurisprudence
Human Experimentation
Privacy
CLARITY
Privacy/legislation & jurisprudence
business
Ownership/legislation & jurisprudence
Personally identifiable information
Zdroj: Social Science & Medicine, 45, 45-49
Social Science & Medicine, 45, 1, pp. 45-49
ISSN: 0277-9536
Popis: 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.
Databáze: OpenAIRE
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