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Promising GenomicsIceland and deCODE Genetics in a World of Speculation$
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Michael Fortun and Roberto Reis

Print publication date: 2008

Print ISBN-13: 9780520247505

Published to California Scholarship Online: March 2012

DOI: 10.1525/california/9780520247505.001.0001

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NonXGovernmental Organization

NonXGovernmental Organization

(p.136) Ch 11 NonXGovernmental Organization
Promising Genomics

Mike Fortun

University of California Press

Under the sign of complicity, the author and Icelandic non-governmental organization Mannvernd became more enfolded as 1998 folded into the twenty-first century. The author spoke under Mannvernd's auspices each time he returned to Iceland. He participated in some of their meetings, where he would almost always see Tómas Zoëga, the psychiatrist at the National University Hospital who was one of the signatories of the 1998 letter to Nature Biotechnology that helped bring the deCODE Genetics events to national and international attention. Tómas also helped bring about the demise of the ethical, social, and legal disaster that was the first draft of the Health Sector Database legislation. One of the few exceptions to Iceland's historical lack of non-governmental organizations is another organization that the psychiatrist Pétur Hauksson helped found: Gedjhálp. The Health Sector Database, and the campaign to opt out of it, remained central to the work of Mannvernd. As a result, the issue of informed, open, broad, or “presumed” consent remained central as well.

Keywords:   Mannvernd, Iceland, non-governmental organizations, Tómas Zoëga, deCODE Genetics, Health Sector Database, Pétur Hauksson, Gedjhálp, presumed consent

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