Center for Bioethics Papers

Document Type

Journal Article

Date of this Version

March 2004

Abstract

A detailed analysis of the Icelandic commercial population-wide genomics database project of deCODE Genetics was performed for the purpose of providing ethics insights into public/private efforts to develop genetic databases. This analysis examines the moral differences between the general case of governmental collection of medical data for public health purposes and the centralized collection planned in Iceland. Both the process of developing the database and its design vary in significant ways from typical government data collection and analysis activities. Because of these differences, the database may serve the interests of deCODE more than it serves the interests of the public, undermining the claim that presumed consent for this data collection and its proprietary use is ethical. We believe that there is an evolving consensus that informed consent of participants must be secured for population-based genetics databases and research. The Iceland model provides an informative counterexample that holds key ethics lessons for similar ventures.

Comments

Postprint version. Published in Social Science and Medicine, Volume 58, Issue 6, March 2004, pages 1201-1209.
Publisher URL: http://dx.doi.org/10.1016/S0277-9536(03)00256-9

Keywords

population studies, genetics, ethics, privacy, genetic epidemiology, commerce, Iceland

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Date Posted: 21 May 2007

This document has been peer reviewed.