Ethical Issues in Light of the Icelandic Experience

Warwick Medical School
Medical Teaching Centre, Gibbet Hill
Wednesday 5th July 2006
Prof. Vilhjálmur Árnason
Department of Philosophy and Centre for Ethics
University of Iceland
Ethical Issues in Light of the Icelandic Experience
In this paper I will discuss ethical issues relating to the research of
DeCODE genetics in Iceland. The company has compiled the world’s
most comprehensive collection of population data on genealogy,
genotypes and phenotypes. This resource is used for identifying key
genes related to common diseases and to the regulation of drug
response. The aim is to develop tests that can predict individual drug
response and thus contribute to effective personalized medicine. I will
describe the database research resource that the company has been
building up and focus on the questions of consent to participation in
database research that have arisen in that context. I maintain that
neither traditional informed consent nor an open blanket consent is
desirable for this kind of research. The first is far too restrictive for
the researchers and the second does not secure well enough the
moral interests of the participants. I will argue that this issue does
not amount to an option between furthering public or private interests
because it is an important social benefit to preserve the dignatory
interests of participants. I will describe an alternative type of consent
which strikes a balance between the freedom of research and the
protection of participants’ interests.