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  • Cited by 1
  • Print publication year: 2007
  • Online publication date: August 2012

15 - Governance of population genetic databases: a comparative analysis of legal regulation in Estonia, Iceland, Sweden and the UK

from Part III - Legal issues

Summary

Introduction

A fundamental issue concerning population genetic databases (‘PGDs’) is how they should be governed – in particular, to what extent formal and informal mechanisms of legal regulation can and should be used to control their setting up, operation and management. To date, the law's proper role within the genetic context generally remains ill-defined. The question of governing biobanks through legal or quasi-legal means remains conspicuously under-theorized. Meanwhile, the forms, extent and effectiveness of governance structures vary markedly between jurisdictions. It is illuminating to contrast Estonia, Iceland, Sweden and the UK. These countries demonstrate a range of regulatory models – from the ad hoc, piecemeal, pragmatic UK approach, with its morass of legislative provisions, common law, codes of practice and guidelines, through to the specifically tailored, purpose-designed Estonian legislative code. Comparing salient features from these jurisdictions, in four key areas, highlights potential strengths and weaknesses. Such analysis reveals strong grounds for investigating the feasibility of constructing a uniform, coherent, principled international legal framework to help govern PGDs as a matter of priority.

To some extent, uncertainty over the precise content, relevance and impact of existing laws (particularly in the UK), and disagreement over the preferred methods and ambit of regulation, reflect deeper normative uncertainties. Some commentators doubt whether law is capable of addressing PGD governance issues given its essentially reactive nature, inflexibility and the dynamism of technological advances.