Project Description

Title: Ethical, Legal and Social Aspects of Human Genetic Databases. A European Comparison

University of Iceland
University of Tartu, Estonia
HETA Law Offices, Tallinn Estonia
Lund University, Sweden
Lancaster University, UK
University of Central Lancashire, UK
University of Oxford, UK

Scientific Coordination: Centre for Ethics, University of Iceland
Financial Coordination: Research Liaisons Office, University of Iceland
Start Date: 1 January 2002

Duration: 36 months

Project Objectives:

The ELSAGEN project had two general objectives:

  1. Ethical, legal and social studies of genetic databases: To anticipate and address questions raised by recent developments in genetics research by providing knowledge of ethical, legal and social aspects of population-based human genetic databases.
  2. Consultation: To consult citizens by providing knowledge of public views of privacy and related moral values in the context of human genetic databases.

I. To meet the first objective we conducted a number of studies that fall into four categories: Ethical, legal, social and what could be called “fundamental” issues.

I.1 Ethical issues. The objective of the studies on ethical issues is to provide knowledge about such ethical concerns as privacy, consent and genetic discrimination in the context of human genetic databases.

I.2 Legal issues. The objective of the studies on legal issues is to provide knowledge about the laws, policies and guidelines relating to genetic databases throughout Europe, and the essential legal problems which have to be addressed in relation to the collection and storage of genetic data; and to discern key common principles from this policy matrix and use them to construct a normative framework.

I.3 Social issues. The objective of the studies on social issues is to provide knowledge about the effects of human genetic databases and genomics on governance and democracy, about the relations of ethical standards, social norms and values as they are reflected in the debates about databases, and about the concepts and applications of social justice in the context of human genetic databases.

I.4 Fundamental issues. The objective of the studies in the fundamental issues is to investigate relations between knowledge, values and human rights. Three studies are planned here, one on fundamental concepts in bioethics and the implications of genetic databases, the second on how ethical frameworks mutate and change in the light of new technologies and the third on the social, cultural, and philosophical context of the science and technology on which human genetic databases are based.

II. Consultation on public views of privacy. The second objective is to provide knowledge about public views of privacy in the context of human genetic databases, people’s trust of public and commercial organisations with regard to collection and storage of personal data, and to what extent these views and attitudes vary between the four countries. A combined quantitative and qualitative sociological study were conducted in the four countries and the results analysed by bioethicists.