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12 - Consent and population genetic databases: a comparative analysis of the law in Iceland, Sweden, Estonia and the UK

from Part III - Legal issues

Published online by Cambridge University Press:  05 August 2012

Matti Häyry
Affiliation:
University of Manchester
Vilhjálmur Árnason
Affiliation:
University of Iceland, Reykjavik
Gardar Árnason
Affiliation:
University of Central Lancashire, Preston
Hördur Helgi Helgason
Affiliation:
Lecturer, University of Iceland
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Summary

Introduction

Ever since the birth of the idea of human rights, it has been generally accepted that human beings should generally be free to make their own decisions, at least in their personal matters. Mill famously proclaimed that ‘the individual is not accountable to society for his actions, insofar as these concern the interests of no person but himself’. Similarly, it has become generally recognized that there exists a private sphere in the life of every person, and that the privacy of this sphere should be observed by others. The details of these concepts, of self-determination and privacy, are in many respects vague, for a variety of reasons. Their substance varies from state to state, for example as to what extent an individual can make decisions that are harmful to him or her. The boundaries of these concepts are also in constant, albeit limited, flux, for example as to what personal matters are to be considered ‘private’. In addition, a consensus on these issues has hardly been reached anywhere, even within a single state, and they therefore remain a source of continuing debate.

Although the particulars of these rights have not achieved universal recognition, and will perhaps never do so, the fact that the fundamental concepts of self-determination and privacy are generally acknowledged has wide-reaching consequences. An example of an activity affected by this is the processing of personal data.

Type
Chapter
Information
The Ethics and Governance of Human Genetic Databases
European Perspectives
, pp. 97 - 107
Publisher: Cambridge University Press
Print publication year: 2007

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