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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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PRINTED FROM CALIFORNIA SCHOLARSHIP ONLINE (www.california.universitypressscholarship.com). (c) Copyright University of California Press, 2022. All Rights Reserved. An individual user may print out a PDF of a single chapter of a monograph in CALSO for personal use.date: 27 June 2022

PresumedXConsent

PresumedXConsent

Chapter:
(p.240) Ch 19 PresumedXConsent
Source:
Promising Genomics
Author(s):

Mike Fortun

Publisher:
University of California Press
DOI:10.1525/california/9780520247505.003.0020

In an article in Nature entitled “Iceland's Doctors Rebuffed in Health Data Row,” Allison Abbott discussed how the Icelandic Medical Association (IMA) had failed to reach agreement with deCODE Genetics over Iceland's new national health sector database, which was to be run by the company. The dispute centred on the plan for automatic inclusion of patients' medical records in the anonymized database. The IMA was insisting that informed consent was necessary for the database—people had to actively opt in—while deCODE continued to insist that the “presumed consent” the company had made sure was in the Health Sector Database legislation was sufficient. Do your own due diligence: a mantra for the era of promising genomics. But no matter how much diligence you did, there would still be some debt due on the negotiation of this presumedXconsent.

Keywords:   Iceland, Icelandic Medical Association, deCODE Genetics, medical records, informed consent, presumed consent, Health Sector Database, genomics

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