Coding and consent: moral challenges of the database project in Iceland

Area of Science:

• Bioethics
• Genetics Research
• Health Informatics

Background:

• The deCODE genetics database project in Iceland highlights ethical dilemmas concerning data security and participant consent.
• Technical security measures have overshadowed discussions on consent for database participation.

Purpose of the Study:

• To address the moral problem of consent in the deCODE genetics database project.
• To evaluate the suitability of informed consent for large-scale genetic databases.
• To propose alternative consent models for database research.

Main Methods:

• Distinguishing between three aspects of the deCODE genetics database.
• Analyzing the ethical implications of different consent types.
• Proposing written authorization as an alternative to informed and presumed consent.

Main Results:

• Individual consent is significant but informed consent is unsuitable for this database.
• Different consent models are appropriate for distinct aspects of the database.
• Written authorization based on general information is presented as a viable alternative.

Conclusions:

• Rethinking consent models is crucial for large-scale genetic databases.
• Written authorization offers a practical approach to consent in database research.
• Balancing technical security with ethical considerations of consent is paramount.