Genetic Privacy: A Challenge to Medico-Legal Norms

By Graeme Laurie | Go to book overview

3
Human genetics and genetic privacy

Good ethics and good law

Good ethics and good law begin with good facts.1 This chapter therefore considers the current state of knowledge about human genetics and outlines the available options for its possible uses. The claims of persons and institutions with an interest in genetic information are examined and the potential conflicts explained. This is a crucial precursor to any discussion about the appropriate responses that ethics and law should have to anyadvances in genetic science and medicine.


The Human Genome Project

The idea of the Human Genome Project was endorsed bythe US National Research Council in 1988,2 and an internationallycoordinated effort was under waybylate 1990 with the aim of mapping and sequencing the entire chain of human DNA:3 the human genome.4 A double helical string of DNA is contained in the nucleus of everycell in every human being, except the gametes. DNA dictates the nature and function of all such cells,5 and for this reason the human genome has been

____________________
1
I am grateful to Professor Michael Grodin of the Department of Health Law, Boston University, for this useful aphorism.
2
National Research Council, Mapping and Sequencing the Human Genome (Washington, DC, National Academy Press, 1988).
3
D eoxyribo nucleic> acid.
4
For general comment on the project and its aims compare J. D. Watson, 'The Human Genome Project: Past, Present and Future' (1990) 248 Science 44, and E. S. Lander, 'Scientific Commentary: The Scientific Foundations and Medical and Social Prospects of the Human Genome Project' (1998) 26 Journal of Law, Medicine and Ethics 184. For an accessible and comprehensive account of the work of the Human Genome Project and its consequences see W. Bodmer and R. Mc Kie, The Book of Man: The Quest to Discover Our Genetic Heritage (New York, Little, Brown, 1994).
5
It is estimated that a human being is composed of ten million million cells.

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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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