Introduction

Population genetic databases typically share a common rationale, namely to be used for medical research regarding genetically related diseases and for the health and medical care of the population concerned. Nevertheless, the material and information gathered in population genetic databases attracts interest from individuals and institutions far beyond the medical and scientific community. In this chapter the law in Estonia, Iceland, the UK and Sweden is discussed in relation to such third-party interests in population genetic databases.

Broadly speaking, interests from third parties can be divided into three types, with different agendas and varying relations to the donor. The regulative response to each interest mirrors the normative choices in casu, but also the more general characteristics of the legal tradition in each jurisdiction.

The first type of interest in the genetic database relates indirectly, though nevertheless immediately, to concerned individuals, namely the genetic relatives. Their interest is based on the fact that genetic relatives share genetically significant characteristics. Information regarding hereditary diseases in the genetic database is accordingly relevant also for persons other than the individual donor. The closer the kinship, the higher the relevance of the information. Regulation regarding feedback to genetic relatives is discussed elsewhere in this book. But when acknowledging the familial nature of genetic information, it could also be argued that genetic relatives should be legally recognized as independent bearers of individual legal rights in relation to the genetic database.