Genetic Privacy: A Challenge to Medico-Legal Norms

By Graeme Laurie | Go to book overview

6
Privacy and property?

Privacy, property and the personality

Privacyissues in the field of genetics have been addressed bya number of international bodies in a varietyof instruments. For example, the Bilbao Declaration highlights the main problem areas that are likely to arise from the work of the Human Genome Project, and pinpoints matters considered to be worthyof immediate attention bythe legal systems of the world. The Declaration includes, 'protection of the personal privacyor confidentialityof genetic information, and determination of cases in which it could feasiblybe altered or overstepped'.1 Moreover, the interest in not knowing – a central focus of this work – has also been recognised. The Council of Europe states in Article 10 (2) of its Convention on Human Rights and Biomedicine: 'Everyone is entitled to know anyinformation collected about his or her health. However, the wishes of individuals not to be so informed shall be observed'.2 Similarly, the UNESCO Universal Declaration on the Human Genome and Human Rights states in Article 5c: 'The right of everyindividual to decide whether or not to be informed of the results of genetic examination and the resulting consequences should be respected'.3 These instruments embodythe best and the worst features of the dilemma that we currentlyface. Theyrecognise the value of an interest which has hitherto received short shrift, but offer aspirational means of protection that, in the absence of specific national interventions, have no substance. Furthermore, while these instruments endorse the value of

____________________
1
The Bilbao Declaration on the Human Genome was drafted in May 1993 at the International Workshop on Legal Aspects of the Human Genome Project, which took place in Bilbao, Spain.
2
Council of Europe, Convention for the Protection of Human Rights and Dignity of the Human Being with Regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine (Oviedo, 1997).
3
UNESCO, Universal Declaration on the Human Genome and Human Rights, adopted unanimouslyon 11 November 1997 in Paris at the Organisation's 29th General Conference.

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Genetic Privacy: A Challenge to Medico-Legal Norms
Table of contents

Table of contents

  • Title Page *
  • Contents vii
  • Preface ix
  • Table of Cases xii
  • Table of Legislation xviii
  • International Instruments xxi
  • Miscellaneous Documents xxiii
  • 1 - Health Care, Patient Rights and Privacy 1
  • 2 - Privacy: Anti-Social Concept or Fundamental Right? 28
  • 3 - Human Genetics and Genetic Privacy 86
  • 4 - Autonomy, Confidentiality and Privacy 182
  • 5 - Privacyand the Public Interest 245
  • 6 - Privacy and Property? 299
  • Index 329
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