Premium
Coding and Consent: Moral Challenges of the Database Project in Iceland
Author(s) -
Árnason Vilhjálmur
Publication year - 2004
Publication title -
bioethics
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.494
H-Index - 55
eISSN - 1467-8519
pISSN - 0269-9702
DOI - 10.1111/j.1467-8519.2004.00377.x
Subject(s) - informed consent , coding (social sciences) , authorization , relation (database) , psychology , database , medicine , computer science , sociology , alternative medicine , social science , computer security , pathology
A major moral problem in relation to the deCODE genetics database project in Iceland is that the heavy emphasis placed on technical security of healthcare information has precluded discussion about the issue of consent for participation in the database. On the other hand, critics who have emphasised the issue of consent have most often demanded that informed consent for participation in research be obtained. While I think that individual consent is of major significance, I argue that this demand for informed consent is neither suitable nor desirable in this case. I distinguish between three aspects of the database and show that different types of consent are appropriate for each. In particular, I describe the idea of a written authorisation based on general information about the database as an alternative to informed consent and presumed consent in database research.