The assent of a nation: genethics and Iceland

• Published in: Clinical Genetics
• Main Author: McInnis, Melvin G
• Format: Article in Journal/Newspaper
• Language: English
• Published: Wiley 1999
• Subjects: Iceland
• Online Access: http://dx.doi.org/10.1034/j.1399-0004.1999.550404.x; https://api.wiley.com/onlinelibrary/tdm/v1/articles/10.1034%2Fj.1399-0004.1999.550404.x; https://onlinelibrary.wiley.com/doi/pdf/10.1034/j.1399-0004.1999.550404.x

The Icelandic parliament passed legislation authorizing the establishment of a national health sector database which will be sponsored financially by private enterprises through DeCode Genetics Inc. Health related data will be gathered from patients, without their informed consent, from all points of contact with Icelandic public and private health care providers. A centralized data curator will ‘non‐personalize’ the identity of the subjects in a one‐way coding system which the government and DeCode Genetics argue overrides the need for informed consent. This legislation is in conflict with the European Data Protection Act, which requires informed consent for the collection of personal data. The law raises many ethical questions regarding the central tenets of informed consent, the power of government, the rights of the human subject, and finally, the responsibility of the clinician balancing commitments of the patient and research.