Biobanks and Legislation in Switzerland – a data protection perspective

Abstract

Introduction

The combination of health and lifestyle data with bodily substances and genetic information has led over the last few years to the creation of so-called biobanks. These biobanks are used to research a large number of diseases of modern civilization and their genetic interactions. One of the best-known projects in this respect is without a doubt the Icelandic biobank, operated since 1998 by a private pharmaceutical company, deCode Genetics, and set up with government support. The database contains family histories and medical records, as well as biological samples taken from a large section of Iceland's homogeneous population. The hope is that this data will allow a correlation to be established between genetic predispositions and the onset of widespread diseases. Other examples of population-based biobanks include the Estonian Genome Project, launched in 2001 by the Estonian Government, as well as the UK Biobank in the UK and PopGen in the state of Schleswig-Holstein in Germany.