The assent of a nation: genethics and Iceland

The Icelandic parliament passed legislation authorizing the establishment o f a national health sector database which will be sponsored financially by private enterprises through DeCode Genetics Inc. Health related data will b e gathered from patients, without their informed consent, from all points o f contact with Icelandic public and private health care providers. A centra lized data curator will 'non-personalize' the identity of the subjects in a one-way coding system which the government and DeCode Genetics argue overr ides the need for informed consent. This legislation is in conflict with th e European Data Protection Act, which requires informed consent for the col lection of personal data. The law raises many ethical questions regarding t he central tenets of informed consent, the power of government, the rights of the human subject, and finally, the responsibility of the clinician bala ncing commitments of the patient and research.