Iceland's Health Sector Database: A Significant Head Start in the Search for the Biological Grail or an Irreversible Error?

• Published in: American Journal of Law & Medicine
• Main Author: Jónatansson, Hróbjartur
• Format: Article in Journal/Newspaper
• Language: English
• Published: Cambridge University Press (CUP) 2000
• Subjects: Law; General Medicine; Health (social science); Iceland
• Online Access: http://dx.doi.org/10.1017/s0098858800010819; https://www.cambridge.org/core/services/aop-cambridge-core/content/view/S0098858800010819

Abstract In December 1998, Iceland's Parliament, the Althing, passed the Act on a Health Sector Database (the Database Act or Act), a highly controversial law authorizing the development of a Health Sector Database (the Database) to collect genetic and medical information already contained in various locations around Iceland as part of Iceland's national health system. As a result of the Database Act, Iceland is the only country in the world with laws authorizing collection and storage of the genetic heritage of an entire population by a private biotechnology corporation with rights to exploit the data as a commercial commodity. Many databases now exist in Iceland as individual and segregated entities that contain detailed medical information about every Icelandic person, both living and dead, dating back to 1915 when the recording commenced.