Chapter

PresumedXConsent

Mike Fortun

in Promising Genomics

Published by University of California Press

Published in print February 2008 | ISBN: 9780520247505
Published online March 2012 | e-ISBN: 9780520942615 | DOI: http://dx.doi.org/10.1525/california/9780520247505.003.0020
PresumedXConsent

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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

Chapter.  5687 words. 

Subjects: Evolutionary Biology

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