The Icelandic Healthcare Database and Informed Consent

• Published in: The New England journal of medicine Vol. 342; no. 24; pp. 1827 - 1830
• Main Authors: Gulcher, Jeffrey R, Stefánsson, Kári
• Format: Journal Article
• Language: English
• Published: United States Massachusetts Medical Society 15-06-2000
• Subjects: Bioethics; Biomedical research; Confidentiality - legislation & jurisprudence; Consent; Databases as Topic - legislation & jurisprudence; Databases, Nucleic Acid; Delivery of Health Care - statistics & numerical data; Genetic Research; Genome, Human; Genotype; Humans; Iceland; Informed Consent; Medical Records Systems, Computerized; Third-Party Consent; Iceland; deCode Genetics; Genetics and Reproduction; Biomedical and Behavioral Research
• ISSN: 0028-4793; 1533-4406
• DOI: 10.1056/NEJM200006153422411

Modern information technology is rapidly changing how new knowledge is discovered in most fields of science, including medicine. This technology offers interesting possibilities in the development of methods to understand diseases better, but it also presents new ethical challenges. The new technology offers the possibility of mining large data sets for knowledge, without a priori hypotheses, by systematically juxtaposing various data in the search for the best fit. This kind of pure combinatorial analysis may be particularly powerful in the case of the common diseases, most of which are complex and have remained beyond the reach of the classic hypothesis-driven . . .