Genetic Privacy: A Challenge to Medico-Legal Norms

By Graeme Laurie | Go to book overview

1
Health care, patient rights and privacy

Privacy as a problem

Privacyis a problem. Or rather, privacycauses problems. It causes problems for sociologists,1 psychologists,2 anthropologists,3 philosophers,4 politicians,5 doctors,6 lawyers,7 governments,8 states,9 communities,10 groups11 and individuals.12 The problems that it causes relate to its definition,13 its function,14 its nature,15 its utility,16 its value17 and its protection.18 The sheer extent of the difficulties is revealed bythe length of the first few notes to this text.

____________________
1
S. I. Benn and G. F. Gaus (eds.), Public and Private in Social Life (London, Croom Helm; New York, St. Martin's Press, 1983).
10
As Westin has commented, 'Needs for individual and group privacyand resulting social norms are present in virtually every society. Encompassing a vast range of activities, these needs affect basic areas of life for the individual, the intimate familygroup, and the communityas a whole', A. Westin, Privacy and Freedom (London, Bodley Head, 1967), p. 13.
11
F. D. Schoeman, 'Adolescent Confidentiality and Family Privacy', in G. Graham and H. La Follette (eds.), Person to Person (Philadelphia, Temple University Press, 1989), pp. 213–34, I. N. Walden and R. N. Savage, 'Data Protection and Privacy Laws: Should Organisations Be Protected?' (1988) 37 International and Comparative Law Quarterly 337.
12
L. Blom-Cooper, 'The Right to be Let Alone' (1989) 10 Journal of Media Law and Practice 53, J. Kupfer, 'Privacy, Autonomy and Self Concept' (1987) 24 American Philosophical Quarterly 81, S. I. Benn, 'Privacy, Freedom and Respect for Persons', in Schoeman, Philosophical Dimensions of Privacy, Gavison, 'Privacyand the Limits of Law', H. Gross, 'Privacyand Autonomy', in J. Feinberg and H. Gross, Philosophy of Law (2nd edn, Wadsworth Inc., USA, 1980), L. Henkin, 'Privacyand Autonomy' (1974) 74 Columbia Law Review 1410, C. Fried, 'Privacy' (1968) 77 Yale Law Journal 475.
13
W. A. Parent, 'A New Definition for Privacyfor the Law' (1983) 2 Law and Philosophy 305, W. A. Parent, 'Recent Work on the Concept of Privacy' (1993) 20 American Philosophical Quarterly 341, Gavison, 'Privacyand the Limits of Law', R. A. Posner, 'The Right to Privacy' (1978) 12 Georgia Law Review 393, D. N. Mc Cormick, 'Privacy: A Problem of Definition' (1974) 1 British Journal of Law and Society 75, Fried, 'Privacy'.
14
J. C. Innes, Privacy, Intimacy and Isolation (New York, Oxford University Press, 1992), S. I. Benn, 'Privacy, Freedom and Respect for Persons', in Schoeman, Philosophical Dimensions of Privacy, Gavison, 'Privacyand the Limits of Law', Fried, 'Privacy', and Murphy, 'Social Distance and the Veil'
15
Much debate centres on the philosophical nature of privacy. Is it a right, a claim, an interest, an issue of control or a state of being? For a discussion of the possibilities and a review of the literature, see Schoeman, Philosophical Dimensions of Privacy: An Anthology, ch.1.
16
J. H. Reiman, 'Privacy, Intimacy and Personhood' (1976) 6 Philosophy and Public Affairs 26, J. Rachels, 'Why Privacy Is Important' (1975) 4 Philosophy and Public Affairs 323, J. J. Thomson, 'The Right to Privacy' (1975) 4 Philosophy and Public Affairs 295, T. Scanlon, 'Thomson on Privacy' (1975) 4 Philosophy and Public Affairs 315.
17
Wacks, Personal Information, Privacy and the Law, Hixson, Privacy in a Public Society, Thomson, 'The Right to Privacy', Scanlon, 'Thomson on Privacy', and Negley, 'Philosophical Views on the Value of Privacy'
18
Historically, this issue has given rise to much concern, but little productive action, in the United Kingdom. In the latter part of the twentieth centurynumerous attempts were made to pass some form of legislation to protect privacy. None succeeded. Several committees were established to examine the matter and report, such as the Younger Committee, Report of the Committee on Privacy, Cmnd 5012 (1972), and the Calcutt Committee, Report of the Committee on Privacyand Related Matters, Cm 1102 (1990), and in 1993 Calcutt reexamined the question of privacylegislation and recommended Parliamentary in tervention (Review of Press Regulation, Cm 2135 (1993)). No direct legal protection resulted. It was not until the passing of the Data Protection Act 1998 in March 2000 and the Human Rights Act 1998 in October 2000 that anything approximating proper recognition and protection of privacyin the United Kingdom was realised.
2
See E. Goffman, The Presentation of Self in Everyday Life (London, Pelican Books, 1971), R. Ingham, 'Privacyand Psychology', in Y. D. Young (ed.), Privacy (Chichester, Wiley& Sons, 1979), ch. 2, S. M. Jouard, 'Some Psychological Aspects of Privacy' (1966) 31 Law and Contemporary Problems 307, P. A. Kelvin, 'Social Psychological Examination of Privacy' (1973) 12 British Journal of Social and Clinical Psychology 248, S. T. Margulis (ed.), 'Privacy as a Behavioural Phenomenon' (1977) 33 Journal of Social Issues, Issue No. 3.
3
See B. Moore, Privacy: Studies in Social and Cultural History (New York, M. E. Sharpe Inc., 1984), R. F. Murphy, 'Social Distance and the Veil' (1964) 6 (1) American Anthropologist 1257, and A. Westin, 'The Origins of Modern Claims to Privacy', in F. D. Schoeman (ed.), Philosophical Dimensions of Privacy (Cambridge, Cambridge University Press, 1984), at 56–74, H. Arendt, The Human Condition (Chicago, Universityof Chicago Press, 1958).
4
J. Kupfer, 'Privacy, Autonomy and Self Concept' (1987) 24 American Philosophical Quarterly 81, G. Negley, 'Philosophical Views on the Value of Privacy' (1966) 31 Law and Contemporary Problems 319, J. H. Reiman, 'Privacy, Intimacy and Personhood' (1976) 6 Philosophyand Public Affairs 26, and generally, F. Schoeman (ed.), Philosophical Dimensions of Privacy: An Anthology (Cambridge, Cambridge University Press, 1984).
5
See J. Ames, 'Privacy Law Forced Back on the Agenda' (1992) 89 (6) Law Society's Gazette 8.
6
K. Berg, 'Confidentiality Issues in Medical Genetics: The Need for Laws, Rules and Good Practices to Secure Optimal Disease Control', Second Symposium of the Council of Europe on Bioethics, Strasbourg, 30 November–2 December 1993, CDBI-SY-SP (93) 3, D. C. Wertz and J. C. Fletcher, 'Privacyand Disclosure in Medical Genetics Examined in an Ethics of Care' (1991) 5 Bioethics 212, G. Dworkin, 'Access to Medical Records: Discovery, Confidentiality and Privacy' (1979) 42 Modern Law Review 88, and T. Cantrell, 'Privacy: The Medical Problems', in Young, Privacy, ch. 9.
7
For example, G. Dworkin, 'Privacyand the Law', in Young, Privacy, ch. 5, R. Gavison, 'Privacyand the Limits of the Law' (1980) 89 Yale Law Review 421, B. S. Markesinis, 'Our Patchy Law of Privacy– Time to do Something about it' (1990) 53 Modern Law Review 802, W. A. Parent, 'A New Definition for Privacyfor the Law' (1983) 2 Law and Philosophy 305, W. L. Prosser, 'Privacy: A Legal Analysis' (1960) 48 California Law Review 338, R. Wacks, Personal Information, Privacy and the Law (Oxford, Clarendon Press, 1989), and S. D. Warren and L. D. Brandeis, 'The Right to Privacy' (1890–91) 4 Harvard Law Review 193.
8
See R. F. Hixson, Privacy in a Public Society (New York, Oxford University Press, 1987), J. P. Gould, 'Privacyand the Economics of Information' (1980) 9 Journal of Legal Studies 827, C. Mellors, 'Governments and the Individual: Their Secrecyand His Privacy', in Young, Privacy, p. 87, J. F. Handler and M. K. Rosenheim, 'Privacyin Welfare: Public Assistance and Juvenile Justice' (1966) 31 Law and Contemporary Problems 377, and W. A. Creech, 'The Privacyof Government Employees' (1966) 31 Law and Contemporary Problems 413.
9
See, for example, Article 8 of the European Convention for the Protection of Human Rights and Article 12 of the Universal Declaration of Human Rights, both of which provide for the protection of personal privacy. For comment on the former see L. G. Loucaides, 'Personality and Privacy Under the European Convention on Human Rights' (1990) 61 British Yearbook of International Law 175.

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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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