Book contents
- Frontmatter
- Contents
- List of contributors
- 1 Introduction: some lessons of ELSAGEN
- Part I Background
- Part II Social concerns
- Part III Legal issues
- 11 Regulating human genetic databases in Europe
- 12 Consent and population genetic databases: a comparative analysis of the law in Iceland, Sweden, Estonia and the UK
- 13 Third parties' interests in population genetic databases: some comparative notes regarding the law in Estonia, Iceland, Sweden and the UK
- 14 Transforming principles of biolaw into national legislation: comparison of four national laws in three aspects
- 15 Governance of population genetic databases: a comparative analysis of legal regulation in Estonia, Iceland, Sweden and the UK
- 16 The legal jigsaw governing population genetic databases: concluding remarks on the ELSAGEN legal findings
- Part IV Ethical questions
- Part V Political considerations
- Part VI Conclusion
- Bibliography
- Index
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
- Frontmatter
- Contents
- List of contributors
- 1 Introduction: some lessons of ELSAGEN
- Part I Background
- Part II Social concerns
- Part III Legal issues
- 11 Regulating human genetic databases in Europe
- 12 Consent and population genetic databases: a comparative analysis of the law in Iceland, Sweden, Estonia and the UK
- 13 Third parties' interests in population genetic databases: some comparative notes regarding the law in Estonia, Iceland, Sweden and the UK
- 14 Transforming principles of biolaw into national legislation: comparison of four national laws in three aspects
- 15 Governance of population genetic databases: a comparative analysis of legal regulation in Estonia, Iceland, Sweden and the UK
- 16 The legal jigsaw governing population genetic databases: concluding remarks on the ELSAGEN legal findings
- Part IV Ethical questions
- Part V Political considerations
- Part VI Conclusion
- Bibliography
- Index
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.
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- The Ethics and Governance of Human Genetic DatabasesEuropean Perspectives, pp. 97 - 107Publisher: Cambridge University PressPrint publication year: 2007
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