Privacy and Health Research. The Netherlands


Basic privacy law: Data Protection Act (Wet Persoonsregistratie) (1988). Authority: Registration Chamber (Registratiekamer).

In 1995 a new "Code of conduct for medical research," covering research on existing medical data, was adopted by the Registration Chamber after years of development. The Code originated from "the desire to achieve a good balance between the requirements of privacy protection on the one hand and those of scientific research on the other." Under this Code, the conditions on processing data in research are guided strongly by whether the data involved are anonymous, key-coded, or identifiable. Data-subject consent is emphasized, as is working with data in non-identifiable form as much as possible.89

(89) The Netherlands Registratiekamer, "Goed Gedrag: Gedragscode Gezondheidsonderzoek" (Registratiekamer, The Hague, The Netherlands, February 1995); "Gedragscode Gezondheidsonderzoek: Verklaring van overeenstemming inzake de gedragscode," Staatscourant 140, 14–16 (July 24, 1995).