Dilemmas of genetic information

Abstract

The past decade has seen an increase in public concern about genetics and the life sciences in Europe and the US. Some applications of the technology have barely infiltrated the public arena before they have been rejected, as was the case with genetically modified (GM) foods in much of Europe. Others have been infiltrating slowly, held up by the limits of the technology and our knowledge about genes. Genetic testing is one such area. Despite the great promises of the Human Genome Project to identify the roles of genes and gene sequences in simple and complex diseases and physical traits, the number of clinically relevant genes that can be directly tested for is small. Nevertheless, there is an underlying assumption that comprehensive information about an individual’s genetic constitution will be readily available. We report on public debates surrounding genetic testing and the use of this information. The aim is to investigate some of the properties of genetic information, how it is interpreted in different contexts, and why it may warrant special attention. The text is interspersed with country case studies on particular issues.