The Genetic Wealth of Nations: Ethics, Politics, and Commerce in Genetic Information

March 1, 2006

Vilhjálmur Árnason, Professor of Philosophy and Chair of the Centre for Ethics at the University of Iceland, discussed the ethical controversies surrounding the development of the Icelandic national genetic databank. A private company called deCODE is currently trying to gather genetic information from the entire Icelandic population of just over 300,000, to integrate that information with data from national health records, and to connect it ultimately with genealogical data going back as far as the Norse settlement 1,100 years ago. The company's aim is to identify the key genes and markers linked to serious diseases and to develop more effective, "tailor-made" drugs to treat these diseases.

Much of the controvery surrounding the databank has centered around how consent is given by the Icelandic participants, and what that consent entails. Many politicians and scientists criticized deCODE for at first attempting to use assumed consent -- that is, assuming all individuals have consented to participating unless they actively opt out of the study. The company later revised its approach, but the question of exactly what participants were consenting to then came to the forefront. Can a participant's sample be used for more than one purpose? Does the participant have to be notified each time a different use is considered? What rights does an individual have when it comes to understanding the medical research he/she is participating in?

Árnason pointed out that such questions were largely raised by experts in the field and other public advocates; the Icelandic people, he said, are much less concerned about privacy and confidentiality if the possible medical outcomes will be of use to humanity. In addition, he observed that many Icelanders did not seem to see much of a difference between deCODE, a private company, and their nationalized healthcare system.

The academic sponsors for this lecture include Legal Studies, Philosophy, Politics, Genetic Counseling, Biochemistry, and the International Center for Ethics, Justice and Public Life, as well as programs in Business, International and Global Studies, Health-Science-Society-Policy, and Social Justice and Social Policy. During his three-day visit to Brandeis, Vilhjálmur visited several classes and met informally with groups of students and faculty.