Population Genetic Databases: A comparative analysis of the law in Iceland, Sweden, Estonia and the UK

Jane Kaye¹, Hordur Helgi Helgason², Ants Nõmper³, Tarmo Sild⁴, Lotta Wendel⁵

¹University of Oxford, ²The Legal Farm, Hartford, ³University of Tartu, ⁴LEXTAL, Estonia, ⁵University of Lund and University of Umeå

Abstract. The first population genetic database proposed in the world was the Icelandic Health Sector Database in 1998, followed by the Umangenomics proposal in Sweden, the Eesti Geenivaramu in Estonia and the UK Biobank. These genetic databases have been established with the primary goal of carrying out genetic research on populations to determine the functionality of genes, as well as the relationships between genes, lifestyle and environment. Population genetic databases contain DNA samples, personal information from interviews and medical records, as well as genealogies and family histories on whole populations for genetic research. This variety of information and the issues that are raised by its use, such as ownership, consent, feedback, genetic counselling, benefit sharing and access to the database, have caused a heated debate in many countries around concerns such as ownership, consent, benefit sharing and access to the database. This paper compares the way in which the law deals with these issues in each jurisdiction through specialist legislation and the way in whichhow these issues challenge existing legal precedents. The conclusion reached is that these issues are not currently addressed by the law across these jurisdictions in a coherent manner and we are some way from achieving a common uniform legal structure for population genetic databases across Europe.