Genetics and Patients' Rights: Where are the Limits?

For example, the Universal Declaration of Human Rights (10 December 1948), the Convention for the Protection of Human Rights and Fundamental Freedoms (4 November 1950), the European Social Charter (18 October 1961), the UN Convention on the Elimination of All Forms of Racial Discrimination (21 December 1965), the International Covenant on Civil and Political Rights and the International Covenant on Economic, Social and Cultural Rights (16 December 1966), the Convention for the Protection of Individuals with regard to Automatic Processing of Personal Data (28 January 1981), the ILO Convention (No. 169) concerning Indigenous and Tribal Peoples in Independent Countries (27 June 1989), the Convention on the Rights of the Child (20 November 1989) and the UN Convention in Biological Diversity (5 June 1992).

See, for example, Report on Human Gene Therapy, UNESCO 1994/95 http://www.unesco.org/ibc/uk/actes/s2/chap3.html

Modifications to alleviate or eradicate sex-linked diseases, such as haemophilia and Duchenne Muscular Dystrophy, are permissible.

This right is not absolute. Article 10(3) goes on to provide that ‘[I]n exceptional cases, restrictions may be placed by law on the exercise of the rights contained in paragraph 2 in the interests of the patient.’

Macklin Cf , Against Relativism: Cultural Diversity and the Search for Ethical Universals in Medicine, 1999, Oxford University Press.

Contrast Annas, ‘Genetic Privacy: There Ought to Be a Law’ (1999) 4 Tex. Rev. L. & Pol. 9 and Rothstein, ‘Why Treating Genetic Information Separately is a Bad Idea’ (1999) 4 Tex. Rev. L. & Pol. 33. Even if it is accepted that genetics does not give rise to any new or fundamentally different ethical dilemmas, it is important to recognise none the less that this field throws many problems into sharp relief, and it is valid therefore to suggest that in the effort to address the acute problems in this area changes in thinking and approach in other areas might be brought about.

This is more likely to be an interim approach. For example, in some countries, such as France, the Netherlands and Australia, moratoria exist on requesting genetic tests and/or the results of prior tests by insurers. Often these moratoria are voluntarily imposed by the industries themselves. More rarely, specific legislation has been passed in certain countries to protect the security of genetic data from requests by insurers or employers. Examples include Austria and Belgium. See data available from the Genetics & Insurance Forum http://w-ww.geneficsinsuranceforum.org.uk/IntemDev/menu.asp.

For example, only six countries had ratified the Council of Europe Convention by 3 October 2000 (Denmark, Greece, Saint-Marin, Slovakia, Slovenia and Spain). In 1993 the Director-General of UNESCO created the International Bioethics Committee (IBC) to respond to the major concerns raised by the progress made in the life and health sciences, and in particular genetics and biotechnology. But, as the first chair of the Committee (Noelle LeNoir) stated: The International Bioethics Committee is to be designed first and foremost as a forum for the exchange of ideas and debate. It will also incite concrete action to be taken in the field. Far from setting itself up as an inspection authority, its basic task will be to facilitate understanding of the upheavals in progress.’ See http://www.unesco.org/ibc/uk/actes/si/chap2.html One can point too to the attitude of the United States towards any terms in the UN Declaration on Human Rights (10 December 1948), the International Covenant on Civil and Political Rights or the International Covenant on Economic, Social and Cultural Rights (16 December 1966) which contain anything approaching a positive right of entitlement. This is especially true in the context of a right to healthcare. See generally, Mann Gruskin Grodin Annas (eds.), Health and Human Rights: A Reader, 1999, Routledge.

See for example, Article 1 of the Universal Declaration on the Human Genome and Human Rights: “The human genome underlies the fundamental unity of all members of the human family, as well as the recognition of their inherent dignity and diversity. In a symbolic sense, it is the heritage of humanity.’ Article 2 then states: ‘[e]veryone has a right to respect for their dignity and for their human rights regardless of their genetic characteristics … [t]hat dignity makes it imperative not to reduce individuals to their genetic characteristics and to respect their uniqueness and diversity.’

See Ball Tyler Harper , ‘Predictive Testing of Adults and Children’ in Clarke (ed.), Genetic Counselling: Practice and Principles, 1994, Routledge Pelias , ‘Duty to Disclose in Medical Genetics: A Legal Perspective’ (1991) 39 American Journal of Medical Genetics, 347.

Almqvist Bloch Brinkman Craufurd Hayden , ‘A worldwide assessment of the frequency of suicide, suicide attempts, or psychiatric hospitalization after predictive testing for Huntington Disease’ (1999) 64 American Journal of Human Genetics, 1293.

Danish Council of Ethics, Ethics and Mapping of the Human Genome, 1993, Copenhagen, p. 60.

Sveger Thelin McNeil , ‘Neonatal α1-antitrypsin screening: parents' views and reactions 20 years after the identification of the deficiency state’ (1999) 88 Acta Paediatrica, 315.

See generally, Chadwick Levitt Shickle (eds.), The Right to Know and the Right Not to Know 1997, Averbury.

Wertz Fletcher , ‘Privacy and Disclosure in Medical Genetics Examined in an Ethic of Care’ (1991) 5 Bioethics 212 at 221.

Bottis Canellopoulou , ‘Comment on a View Favouring Ignorance of Genetic Information: Confidentiality, Autonomy, Beneficence and the Right Not to Know’ (2000) 7(2) European Journal of Health Law 173. for a response, see Laurie , ‘Protecting and Promoting Privacy in an Uncertain World: Further Defences of Ignorance and the Right Not to Know’ (2000) 7(2) European Journal of Health Law 185.

See, Safer v Estate of Pack 677 A.2d 1188 (N.J. 1996) and Pate v Threlkel 661 So. 2d 278 (Fla. 1995).

For more information see Laurie , ‘Challenging Medical-legal Norms: The Role of Autonomy, Confidentiality and Privacy in Protecting Individual and Familial Group Rights in Genetic Information’, 2001, Journal of Legal Medicine, March, forthcoming.

Attorney General v Guardian Newspapers No 2 [1990] 1 AC 109.

These ideas are expanded more fully in Laurie, Legal and Ethical Aspects of Genetic Privacy, 2001, Cambridge University Press, forthcoming.

Van Manen Levering , Childhood's Secrets: Intimacy, Privacy and the Self 1996, Teachers College Press.

See, for example in the context of Huntington Disease, Almqvist et al., ‘A Worldwide Assessment of the Frequency of Suicide, Suicide Attempts, or Psychiatric Hospitalization after Predictive Testing for Huntington Disease’, loc. cit. The authors surveyed 100 centres in 21 countries and gathered data on 4,527 individuals who had undergone predictive genetic testing for Huntington disease. Of those reviewed, 1,817 people had received a positive result, of whom five had taken their own lives. This extrapolates to 138/100,000 suicides per year, compared to the United States average of 12–13/100,000 per year. See too, Bird , ‘Outrageous Fortune: The Risk of Suicide in Genetic Testing for Huntington Disease’ (1999) 64 American Journal of Human Genetics 1289. Also, Thelin McNeil Aspergren-Jansson Sveger , ‘Psychological consequences of neonatal screening for alpha₁-antitrypsin deficiency (ATD). Parental reactions to the first news of their infants' deficiency’ (1985) 74 Acta Paedatrica Scandinavica 787, and Fanos Johnson , ‘Perception of Carrier Status by Cystic Fibrosis Siblings’ (1995) 57 American Journal of Human Genetics 431.

See, Greely , ‘Iceland's Plan for Genomic Research: Facts and Implications’ (2000) 40 Jurimetrics Journal 153.

Amardóttir Björgvinsson Matthíasson , ‘The Icelandic Health Sector Database’ (1999) 6 European Journal of Health Law 307.

See, for example, Chadwick , ‘The Icelandic Databas—Do Modern Times Need Modern Sagas?’ (1999) 319 British Medical Journal, 441 and Abbing Roscam , ‘Central Health Database in Iceland and Patients' Rights’ (1999) 6 European Journal of Health Law 363.

Etzioni Cf, , The Limits of Privacy 1999, Basic Books, and Foster Sharp Freeman Chino Bernsten Carter , ‘The Role of Community Review in Evaluating the Risks of Human Genetic Variation Research’ (1999) 64 American Journal of Human Genetics 1717 and Rubinstein , ‘If I Am Only for Myself, What Am I? A Communitarian Look at the Privacy Stalemate’ (1999) 25 American Journal of Law & Medicine 203.

For comment generally, see Gross , ‘Autonomy and Paternalism in Communitarian Society: Patient Rights in Israel’ (1999), July–August, Hastings Center Report 13.

Ibid., at 17.

Etzioni , ‘On Restoring the Moral Voice’ in Etzioni (ed.), Rights and the Common Good: The Communitarian Perspective 1995, St. Martin's Press, pp. 271–276 at 273.