The Icelandic Healthcare Database and Informed Consent
- New England Journal of Medicine
Author/s: -Gulcher, Jeffrey R. -Stefánsson, Kári
Journal: New England Journal of Medicine
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 approach to biomedical research. However, to take full advantage of the new techniques, it is important to have access to large amounts of primary data in one place. This calls for large data bases on health care that can be mined for knowledge, either alone or in combination with other data on disease and health, such as variations in the human genome.