The principal aim of this part of the book is to provide empirical evidence about public attitudes to genetic information. In particular, we investigated public perceptions of privacy in relation to personal medical and genetic data and people's attitudes to the trustworthiness of public and private organizations in the four countries (Iceland, UK, Sweden and Estonia). It is widely accepted that issues such as the donation of genetic information to population-based genetic databases straddle the boundary between individual legal and ethical concerns and the wider concerns of society, and it is with a view to providing a better understanding of these wider social concerns that the ELSAGEN sociology team are reporting these research findings.

To begin with, we felt that it was crucial to take account of the existing, and very different, social contexts in each of the countries where the databases are being introduced: first of all (in 1998) the widely reported Health Sector Database in Iceland, followed by the UmanGenomics venture in Sweden, the Estonian Genome Project and the UK Biobank. Each of these projects, to collect a variety of genetic, environmental and lifestyle information, has different operating features and is being launched into a different social and legal context. One of our initial concerns was to understand the existing national attitude to new developments in science and technology (particularly biotechnology).