Privacy is a problem. Or rather, privacy causes 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 by the 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).
2 See E. Goffman, The Presentation of Self in Everyday Life (London, Pelican Books, 1971), R. Ingham, 'Privacy and 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, University of 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 Philosophy and 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, 'Privacy and 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, 'Privacy and the Law', in Young, Privacy, ch. 5, R. Gavison, 'Privacy and 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,
One might wonder, as a result, what another text on privacy could meaningfully contribute to the debate. A first step to answering this question is to realise that the scope of privacy is so wide-ranging that no reasonable attempt can be made to analyse the concept in all of its facets and guises. This book examines the role of privacy in a health care setting. It considers patient privacy and the interface between medicine and law in the protection of individual rights as regards the provision of health care. In particular, the contribution of this work to the general debate about privacy lies in an examination of the privacy issues raised by what has been termed the New Genetics.
W. A. Parent, 'A New Definition for Privacy for 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, 'Privacy and the Economics of Information' (1980) 9 Journal of Legal Studies 827, C. Mellors, 'Governments and the Individual: Their Secrecy and His Privacy', in Young, Privacy, p. 87, J. F. Handler and M. K. Rosenheim, 'Privacy in Welfare: Public Assistance and Juvenile Justice' (1966) 31 Law and Contemporary Problems 377, and W. A. Creech, 'The Privacy of 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 ofInternational Law 175.
10 As Westin has commented, 'Needs for individual and group privacy and 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 family group, and the community as 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. LaFollette (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, 'Privacy and the Limits of Law', H. Gross, 'Privacy and Autonomy', in J. Feinberg and H. Gross, Philosophy of Law (2nd edn, Wadsworth Inc., USA, 1980), L. Henkin, 'Privacy and Autonomy' (1974) 74 Columbia Law Review 1410, C. Fried, 'Privacy' (1968) 77 Yale Law Journal 475.
13 W. A. Parent, 'A New Definition for Privacy for 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, 'Privacy and the Limits of Law', R. A. Posner, 'The Right to Privacy' (1978) 12 Georgia Law Review 393, D. N. McCormick, '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, 'Privacy and the Limits of Law', Fried, 'Privacy', and Murphy, 'Social Distance and the Veil'.
The advent of modern genetic science and genetic testing has given rise to acute problems in the health care context, some real and others imaginary. For example, the discovery of a predisposition to a genetic condition in one individual often also reveals potential risks to the blood relatives of that individual. Thus, individual genetic information can unlock many secrets within the wider genetic family. There is, therefore, potential for conflict over access to, and control of, such information. Traditionally, the duty of confidentiality owed by a health care professional to a patient has provided an appropriate means by which personal health information has been kept secure. There are serious doubts, however, whether the issues that surround genetic information in the familial milieu can be adequately dealt with within the envelope of confidentiality. This is an amorphous and ill-defined duty that is compromised by its twin roles of protecting both the confidential relationship and the confidential information which arises from that relationship. Moreover, to the extent that the duty of confidentiality is solely concerned with keeping confidential information out of the public sphere, it says nothing about the duties that might be owed within the confidential relationship towards the subjects of the information so as to ensure, inter alia, that the personal interests of these individuals are not treated with a lack of respect by unwarranted uses of information with regard to the subjects themselves.
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 century numerous 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 Privacy and Related Matters, Cm 1102 (1990), and in 1993 Calcutt reexamined the question of privacy legislation and recommended Parliamentary intervention (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 privacy in the United Kingdom was realised.
The principle of respect for patient autonomy - which has been described as the guiding ethical principle in health care and which has received unprecedented recognition by the laws of most Western states -is similarly ill-equipped to provide a comprehensive solution to the problems posed byfamilial genetic information. This is because the focus of an autonomy-based argument is largely on the individual and her ability to control aspects of her life. The 'group' nature of claims concerning family information poses a serious conceptual threat to this paradigm. Moreover, health care professionals frequently confuse the desire to respect autonomous patient choices with a desire to facilitate those choices and, as a result, patients are often placed in the invidious position of having to make choices that they might otherwise have avoided.
This book examines these, and other, problems and argues for the value of an appeal to privacy in seeking to resolve some of the more intractable issues. A unique definition of privacy is offered by which to address these dilemmas. The construct is also intended to enrich the discourse on the role and the limits of established principles in medical law and ethics, such as respect for patient autonomy and confidentiality. The work advocates a greater role for privacy in the health care setting; more specifically, it examines the need for stronger legal protection of privacy in the shadow of new challenges arising from advances in human genetics.
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