10 - A conversational approach to the ethics of genetic testing  pp. 149-164

A conversational approach to the ethics of genetic testing

By Michael Parker

Image View Previous Chapter Next Chapter



Recognition and respect for personhood

In his book Humanity: A Moral History of the Twentieth Century, Jonathan Glover suggests that the inhumane treatment of human beings is made possible by the failure or refusal to see them as persons (Glover 2001). It does not follow from this that the ability to see people as persons will necessarily lead one to respect their personhood. Nevertheless, it does suggest that the ability (or willingness) to recognise personhood in others, to see them as persons like ourselves, can have an important role to play in creating sensitivity to the morally relevant features of situations such as the one described by Anneke Lucassen, and it may mean that we are more likely as a result to be respectful of the personhood of those with whom we come into contact in our personal or professional lives. The demand for reciprocal recognition of and respect for personhood – that is the requirement that those making moral judgements ‘place themselves in the shoes’ of those about whom or for whom a decision is being made – has a long history in moral philosophy, as has another related requirement, that we should ‘treat others as we would wish ourselves to be treated’, the so-called Golden Rule. Why is this and why is it that the desires, wishes and interests of people are of special moral importance?

10

Reference Title: References

Reference Type: reference-list

Beauchamp, T. and Childress, J. (2001). Principles of Biomedical Ethics, 5th edn. Oxford: Oxford University Press.
De Beauvoir, S., (1969). A Very Easy Death. London: Penguin.
Brody, H., (2003). Stories of Sickness, 2nd edn. Oxford: Oxford University Press.
Gilligan, C., (1993). In a Different Voice: Psychological Theory and Women's Development. Cambridge, Mass.: Harvard University Press.
Hunter, K. M., (1991). Doctors' Stories: The Narrative Structure of Medical Knowledge. Princeton, New Jersey: Princeton University Press.
Hursthouse, R., (1987). Beginning Lives. Oxford: Blackwell.
Jonsen, A. and Toulmin, S. (1988). The Abuse of Casuistry. London: University of California Press.
Sherwin, S., (1992). No Longer Patient: Feminist Ethics and Health Care. Philadelphia: Temple University Press.
Zaner, R. M., (1988). Ethics and the Clinical Encounter. Englewood Cliffs, New Jersey: Prentice Hall.

Reference Title: References

Reference Type: reference-list

Lucassen, A. and Parker, M. (2004). Confidentiality and ‘serious harm’ in genetics: preserving the confidentiality of one patient and preventing harms to relatives. Eur J Human Gen, 12(2), 93–7.
Parker, M. and Lucassen, A. (2004). Genetic information: a joint account? BMJ, 329, 165–7.

Reference Title: References

Reference Type: reference-list

Ash, T. G. (2002). Truth is another country. The Guardian, Review, 16 November, 4–6. http://books.guardian.co.uk/
Booth, W. (2002). Ethics of medicine, as revealed in literature. In R. Charon and M. Montello, eds. Stories Matter. New York and London: Routledge.
British Medical Association. (1998). Human Genetics. London: BMA.
Chambers, T. S. (1994). The bioethicist as author: the medical ethics case as rhetorical device. Lit Med, 13, 60–78.
Chambers, T. S. (1999). The Fiction of Bioethics: Cases as Literary Texts. New York: Routledge.
Chambers, T. S. (2002). From the ethicist's point of view: the literary nature of ethical enquiry. Hastings Center Report Jan.–Feb. 1996. Reproduced in K. W. M. (Bill) Fulford, D. L. Dickenson and T. H. Murray, Healthcare Ethics and Human Values. Cambridge: CUP, 70–5.
Cobley, P. (2001). Narrative. London: Routledge.
Forster, E. M. (1971). Aspects of the Novel. Harmondsworth, Middx: Penguin Books.
Glover, J. (1999). Humanity: A Moral History of the Twentieth Century. London: Jonathan Cape.
Greenhalgh, T. and Hurwitz, B., eds., (1998). Narrative-Based Medicine. London: BMJ Books.
Guroian, V. (1998). Tending the Heart of Virtue. Oxford: OUP.
House of Commons Science and Technology Committee. (1995). Human Genetics: The Science and Its Consequences. London: HMSO.
Hurwitz, B. (2000). Narrative and the practice of medicine. Lancet, 356, 2086–9.
Hurwitz, B. (2002). Informed consent and access to personal medical records for the purposes of health services research. In L. Doyal and J. Tobias, eds., Informed Consent in Medical Research. London: BMJ Books, 230–9.
King, N. M. P. and Stanford, A. F. (1992). Patient stories, doctor stories, and true stories: a cautionary reading. Lit Med, 11, 185–99.
Levine, P. (1998). Living Without Philosophy: On Narrative, Rhetoric, and Morality. Albany: State University of New York Press.
MacIntyre, A. (1981). After Virtue: A Study in Moral Theory. London: Duckworth.
Morgan, D. (2001). Issues in Medical Law and Ethics. London: Cavendish.
Nuffield Council on Bioethics. (1993). Genetics Screening: Ethical Issues. London: Nuffield Council.
O'Connor, F. (1972). Mystery and manners: Occasional Prose. Selected and edited by S. Fitzgerald and R. Fitzgerald. London: Faber & Faber.
Pellegrino, E. D. (1997). Bioethics as an interdisciplinary enterprise: where does ethics fit in the mosaic of disciplines? In R. A. Carson and C. R. Burns, eds., Philosophy of Medicine and Bioethics. Dordrecht: Kluwer, 1–23.
Smith, H. B. (1981). Narrative versions, narrative theories. In W. J. T. Mitchell, ed., On Narrative. Chicago: University of Chicago Press, 209–32.
Uspensky, B. (1973). A Poetics of Composition. Berkeley: University of California Press.
Walzer, M. (1987). Interpretation and Social Criticism. Cambridge, Mass.: Harvard University Press.
Widdowshoven, G. A. M. and Smits, M.-J. (1996). Ethics and narratives. In R. Josselson, ed., Ethics and Process in the Narrative Study of Lives, vol. 4. Newburypark: Sage, 275–87.
Widdershoven, G. and Sohl, C. (1999). Interpretation, communication and action. Four stories about supported employment. In T. A. Abma, ed., Telling Tales; On Evaluation and Narrative. Advances in Program Evaluation, Vol. 6. Greenwich, Conn.: JAI Press 109–130.
Wolf, S. M. (1986). Feminism and Bioethics. New York: OUP.

Reference Title: References

Reference Type: reference-list

Beauchamp, T. and Childress, J. (1994). Principles of Biomedical Ethics, 4th edn. Oxford: OUP.
Bellah, R., (1985). Habits of the Heart: Individualism and Commitment in America. Berkeley: University of California Press.
Campbell, A. V., (1984). The Gospel of Anger. London: Society for Promoting Christian Knowledge.
Campbell, A. V., (1998). The Ethics of Care as Virtue Ethics. In M. Evans, ed., Advances in Bioethics. London: JAI Press.
Campbell, A. V. and Swift, T. (2002). What does it mean to be a virtuous patient? Scot J Health Care Chaplains, 5(1), 29–35.
Crisp, N., (1996). How Should One Live? Essays on the Virtues. Oxford: Clarendon Press.
Gillon, R., (1994). The four principles: a reappraisal. In R. Gillon and A. Lloyd, eds., Principles of Health Care Ethics. Chichester: John Wiley, 319–33.
MacIntyre, A., (1985). After Virtue: A Study in Moral Theory, 2nd edn. London: Duckworth.
May, W. F., (1983). The Physician's Covenant. Philadelphia: Westminster Press.
May, W. F., (1991). The Patient's Ordeal. Bloomington: Indiana University Press.
Nussbaum, M., (1988). Non-relative virtues: an Aristotelian approach. In P. A. French, T. E. Uehling and H. K. Wettstein eds., Ethical Theory, Character, and Virtue. Notre Dame: University of Notre Dame Press.
Parfit, D., (1984). Reasons and Persons. Oxford: Clarendon Press.
Pellegrino, E. and Thomasma, D. C. (1998). For the Patient's Good: The Restoration of Beneficence in Health Care. Oxford: OUP.
Simpson, P., (1997). Contemporary virtue ethics and Aristotle. In D. Statman, ed., Virtue Ethics: A Critical Reader. Edinburgh: Edinburgh University Press.
Statman, D., ed., (1997). Virtue Ethics: A Critical Reader (Introduction). Edinburgh: Edinburgh University Press.
Widdershoven, G. A. M. and Weijts, W. (2002). Diagnostic Styles in Clinical Relationships. In K. W. M. Fulford, D. L. Dickenson and T. H. Murray, eds., Health Care Ethics and Human Values. London: Blackwell.

Reference Title: References

Reference Type: reference-list

Agich, G. J., (1993). Autonomy and Long-Term Care. Oxford: Oxford University Press.
Akrich, M., (1992). The de-scription of technical objects. In W. Bijker and J. Law, eds., Shaping Technology/Building Society. Cambridge, Mass: MIT Press, 205–24.
Arras, J. D. (1990). Aids and reproductive decisions having children in fear and trembling. Milbank Quarterly, 68, 353–82.
Bernstein, R. J., (1983). Beyond Objectivism and Relativism. Oxford: Oxford University Press.
Emanuel, E. J. and Emanuel, L. L. (1992). Four models of the physician–patient relationship. JAMA, 267, 2221–6.
Frank, A. W., (1995). The Wounded Storyteller. Chicago: Chicago University Press.
Gadamer, H.-G., (1960). Wahrheit und Methode. Tübingen: Mohr.
Gadamer, H.-G. (1977). Die Aktualität des Schönen. Stuttgart: Reclam.
Habermas, J., (1991). Erläuterungen zur Diskursethik. Frankfurt am Main: Suhrkamp.
Heidegger, M., (1927). Sein und Zeit. Tübingen: Max Niemeyer Verlag.
Husserl, E., (1976). Ideen zu einer reinen Phanomenologie und phanomenologischen Philosophie. Erstes Buch. The Hague: Martinus Nijhoff.
Leder, D., (1994). Toward a hermeneutical bioethics. In E. Dubose, R. Hamel and L. O'Connell, eds., A Matter of Principles? Valley Forge: Trinity Press International, 240–59.
MacIntyre, A., (1981). After Virtue. London: Duckworth.
Mackenzie, C. and Stoljar, N. (2000). Relational Autonomy. Oxford: Oxford University Press.
Ricoeur, P., (1983). Temps et récit, I. Paris: Editions du Seuil.
Tronto, J. C., (1993). Moral Boundaries: A Political Argument for an Ethic of Care. New York: Routledge.
Walker, M. U., (1998). Moral Understandings. London: Routledge.
White, M. T. (1999). Making responsible choices. An interpretive ethic for genetic decision-making. Hastings Center Report, 29(1), 14–21.
Widdershoven, G. A. M. (1993). The story of life. In A. Lieblich and R. Josselson, eds., The Narrative Study of Lives. I. London: Sage, 1–20.
Winograd, T. and Flores, F. (1986). Understanding Computers and Cognition. Norwood, New Jersey: Ablex.
Wittgenstein, L., (1957). Philosophische Untersuchungen. Frankfurt am Main: Suhrkamp.

Reference Title: References

Reference Type: reference-list

Brody, H., (1992). The Healer's Power. New Haven: Yale University Press.
Foucault, M., (1991). Discipline and Punish: The Birth of the Prison. Harmondsworth: Penguin.
Foucault, M. (1998). The History of Sexuality. Volume 1: The Will to Knowledge. Harmondsworth: Penguin.

Reference Title: Bibliography

Reference Type: bibliography

Adorno, T., (2000). Problems of Moral Philosophy. Cambridge: Polity Press.
Bakhtin, M. M., (1983). The Dialogic Imagination and Other Essays. Austin: University of Texas Press.
Benjamin, W., (1999). Illuminations. London: Pimlico.
Bernstein, J., (2001). Disenchantment and Ethics. Cambridge: Cambridge University Press.
Bloch, E., (2000). The Spirit of Utopia. Stanford: Stanford University Press.
Das, V., Kleinman, A., Ramphele, M. and Reynold, P. (2000). Violence and Subjectivity. Berkeley: University of California Press.
Deleuze, G. and Guattari, F. (2002). A Thousand Plateaux. London: Continuum.
Derrida, J., (1980). Violence and metaphysics: an essay on the thought of Emmanuel Lévinas. In J. Derrida, Writing and Difference. Chicago: University of Chicago Press, 79–153.
Foucault, M., (2000). Power: Essential Works of Foucault ed. 1954–1984, Volume 3, J. D. Faubion. Harmondsworth: Penguin.
Fraser, N., (1990). Unruly Practices. Cambridge: Polity Press.
Guha, R. and Spivak, G. C., eds. (1989). Selected Subaltern Studies. Oxford: Oxford University Press.
Habermas, J., (1974). Knowledge and Human Interests. London: Heinemann Educational.
Latour, B., (1993). Irreductions. In B. Latour, The Pasteurisation of France, followed by Irreductions. Cambridge, Mass.: Harvard University Press, 153–236.
Lévinas, E., (1991). Ethics and Infinity. Pittsburgh: Duquesne University Press.
Lukes, S., (1975). Power: A Radical View. Basingstoke: Macmillan.
Lyotard, J.-F., (1988). The Differend: Phrases in Dispute. Manchester: Manchester University Press.
Marx, K., (1975). Economic and Philosophical Manuscripts of 1844. In R. Livingstone and G. Benton, eds., Karl Marx: Early Writings. Harmondsworth: Penguin.
Nietzsche, F., (1994). On the Genealogy of Morals, ed. K. Ansell-Pearson and C. Diethe. Cambridge: Cambridge University Press. {Originally published 1887.}
Scheper-Hughes, N., (1993). Death Without Weeping: The Violence of Everyday Life in Brazil. Berkeley: University of California Press.
Sloterdijk, P., (1997). Critique of Cynical Reason. Minneapolis: University of Minnesota Press.
Strathern, M., (1992). After Nature: English Kinship in the Late Twentieth Century. Cambridge: Cambridge University Press.
Weil, S., (2002). Oppression and Liberty. London: Routledge.

Reference Title: References

Reference Type: reference-list

Barthes, R. (1973). Mythologies. London: Paladin.
Casey, J. (1971). Actions and consequences. In J. Casey, Morality and Moral Reasoning. London: Methuen, 155–205.
Derrida, J. (1967). De la grammatologie. Paris: Minuit. (English translation: Spivak, G. C. (1976). Of Grammatology. Baltimore: Johns Hopkins University Press).
Derrida, J.(1992). Mochlos or the conflict of the faculties. In R. Rand, ed., Logomachia: The Conflict of the Faculties. Lincoln, Nebr. and London: University of Nebraska Press, 1–34.
Derrida, J.(1998). Resistances of Psychoanalysis. (English translation: Kamuf, P., Brault, P.-A. and Nass, M. Stanford, Calif.: California University Press.) {Originally published in French 1996.}
Heller, J. (1984). God Knows. London: Cape.
Lyotard, J.-F. (1993). Note on the meaning of ‘post-’. In T. Docherty, ed., Postmodernism: A Reader. Hemel Hempstead: Harvester, 47–50.
Radio Times. (2002). 19–25 January, 36.
Rawls, J. (1972). A Theory of Justice. Oxford: Oxford University Press.
Rorty, R. (1978). Philosophy as a kind of writing: an essay on Derrida. N Lit Hist, 10, 141–60.
Rorty, R. (1986). Freud and moral reflection. In J. H. Smith and W. Kerrigan, eds., Pragmatism's Freud: The Moral Disposition of Psychoanalysis. Baltimore: Johns Hopkins University Press, 1–27.
Ryle, G. (1949). The Concept of Mind. London: Hutchinson.
Shusterman, R. (1988). Postmodernist aestheticism: a new moral philosophy? Theory, Culture & Society, 5, 337–55.
Withers, R. (1997). If on a winter's night an editor … Teaching Higher Ed, 2(3), 219–24.

Reference Title: References

Reference Type: reference-list

Bentham, J. (1948). The Principles of Morals and Legislation. New York: Hafner. [Originally published 1789.]
Griffin, J. (1986). Well-Being. Oxford: Clarendon Press.
Hare, R. M. (1998). A utilitarian approach. In H. Kuhse and P. Singer, eds., A Companion to Bioethics. Oxford: Blackwell, 80–5.
Harris, J. (2001). The survival lottery. In J. Harris, ed., Bioethics. Oxford: Oxford University Press, 300–15.
Hope, T., Savulescu, J. and Hendrick, J. (2003). Medical Ethics and Law: The Core Curriculam. Edinburgh: Churchill Livingstone.
Mill, J. S. (1910). On Liberty. London: J. M. Dent and Sons. [Originally published 1859.]
Parfit, D. (1984). Reasons and Persons. Oxford: Clarendon Press, 493–502.
Robertson, R. and Savulescu, J. (2001). Is there a case in favour of predictive testing of children? Bioethics, 15, 1526–49.
Savulescu, J. (2001). Predictive genetic testing in children. Med J Australia, 175, 379–81.
Savulescu, J. (2003). Bioethics: utilitarianism. In D. Cooper, ed., Nature Encylopaedia of the Human Genome, Volume 1. London: Nature Publishing Group, 288–95.

Reference Title: References

Reference Type: reference-list

Benson, P., (2000). Feeling crazy: self-worth and the social character of responsibility: In Mackenzie and Stoljar (2000), 72–93 (see below).
Carse, A. I. and Lindemann Nelson, H. (1996). Rehabilitating care. Kennedy Inst Ethics J, 6(1), 19–35.
Code, L., (1991). What Can She Know? Feminist Theory and the Construction of Knowledge. New York: Cornell University Press.
Dillon, R. (1992). Respect and care: toward moral integration. Can J Philosophy, 22, 105–32.
Donchin, A., (2000). Autonomy and interdependence: quandaries in genetic decision making. In Mackenzie and Stoljar (2000), 239–40 (see below).
Gilligan, C., (1993). In a Different Voice: Psychological Theory and Women's Development. Cambridge, Mass.: Harvard University Press.
Govier, T. (1993). Self-trust, autonomy and self-esteem. Hypatia, 8(1), 99–120.
Hampton, J. (1997). The wisdom of the egoist: the moral and political implications of valuing the self. Soc Philosophy Policy, 14(1), 21–51.
Held, V., (1993). Feminist Morality: Transforming Culture, Society and Politics. Chicago: University of Chicago Press.
Hoagland, S. L. (1990). Some concerns about Nel Noddings' caring. Hypatia, 5(March), 107–14.
Jaggar, A. (1989). Feminist ethics: some issues for the nineties. J Soc Philosophy, 20, 91–107.
Jaggar A. (1995). Caring as a feminist practice of moral reason. In V. Held, ed., Justice and Care: Essential Readings in Feminist Ethics. Boulder: Westview Press, 179–202.
Kohlberg, L., (1981). The Philosophy of Moral Development: Moral Stages and the Idea of Justice. San Francisco: Harper & Row.
Lindemann Nelson, H. and Lindemann Nelson, J. (1995). The Patient in the Family. London: Routledge.
Little, M. O. (1998). Care: from theory to orientation and back. J Med Philosophy, 23(2), 90–209.
Mackenzie, C. and Stoljar, N., eds. (2000). Relational Autonomy: Feminist Perspectives on Autonomy, Agency and the Social Self. New York: Oxford University Press.
McCullough, L. B. (1998). Molecular medicine, managed care and the moral responsibilities of patients and physicians. J Med Philosophy, 23(1), 3–9.
Meyers, D., (1989). Self, Society and Personal Choice. New York: Columbia University Press.
Noddings, N., (1984). Caring: A Feminine Approach to Ethics and Moral Education. Berkeley: University of California Press.
Reich, W. T., (1995). History of the notion of care. In W. T. Reich, ed., Encyclopedia of Bioethics. New York: Macmillan USA, 319–44.
Rich, A. (1980). Compulsory heterosexuality and lesbian existence. Signs, 5, 631–60.
Ricoeur, P., (1992). Oneself as Another. Chicago: University of Chicago Press, 191.
Silvers, A. (1995). Reconciling equality to difference: caring (f)or justice for people with disabilities. Hypatia, 10(1), 30–46.
Tong, R., (1996). Feminist approaches to bioethics. In S. M. Wolf, ed., Feminism and Bioethics: Beyond Reproduction. New York: Oxford University Press, 67–95.
Tronto, J., (1993). Moral Boundaries: A Political Argument for an Ethics of Care. New York: Routledge, 103.
Veatch, R. (1998). The place of care in ethical theory. J Med Philosophy, 23(2), 210–24.
Walker, M. U. (1991a). Moral understandings: alternative ‘epistemology’ for a feminist ethics. Hypatia, 4(2), 16–28.
Walker, M. U. (1991b). Partial consideration. Ethics, 101(4), 758–74.
White, M. T. (1999). Making responsible decisions: an interpretive ethic for genetic decision-making. Hastings Center Report, 99, 1.
Wolf, S. M., ed., (1996). Feminism and Bioethics: Beyond Reproduction. New York: Oxford University Press.

Reference Title: References

Reference Type: reference-list

Berlin, I. (1969). Two concepts of liberty. In I. Berlin, Four Essays on Liberty. Oxford: Oxford University Press, 131.
Daniels, N. (2000). Accountability for reasonableness. BMJ, 321, 1300–1.
Emanuel, E. J. and Emanuel, L. L. 1992. Four models of the physician–patient relationship. JAMA, 267, 2221–6.
General Medical Council. (2001). Confidentiality. London: General Medical Council.
Glover, J., (2001). Humanity: A Moral History of the Twentieth Century. London: Pimlico.
Harré, R., (1998). The Singular Self. London: Sage.
Harré, R. and Gillett, G. (1994). The Discursive Mind. London: Sage 99–111.
Harris, J., (1985). The Value of Life. London: Routledge.
Honneth, A. (1995). The Struggle for Recognition: The Moral Grammar of Social Conflicts. Cambridge, Mass.: MIT Press.
Locke, J. (1984). An Essay Concerning Human Understanding. Glasgow: William Collins, 211. [Originally published 1690.]
Mead, G. H. (1974). Mind, Self and Society. Chicago: Chicago University Press. [Originally published 1934.]
Parker, M. (1995). Growth of Understanding. Aldershot: Avebury.
Parker, M. (2001). Genetics and the interpersonal elaboration of ethics. Theoret Med Bioethics, 22, 451–9.
Parker, M. and Lucassen, A. (2004). Genetic Information: A Joint Account? BMJ, 329, 165–7.
Strawson, P. F., (1969). Individuals. London: Methuen.
Taylor, C. (1989). Sources of the Self. Cambridge: Cambridge University Press, 35–6.
Vygotsky, L. S. (1978). Mind in Society. Cambridge, Mass.: Harvard University Press.
Vygotsky, L. S. (1979). Consciousness as a problem of the psychology of behaviour. Soviet Psychol, 17, 29.
Vygotsky, L. S. (1991). The genesis of the higher mental functions. In P. Light, S. Sheldon and M. Woodhead, eds., Learning to Think. London: Routledge, 36.

Reference Title: References

Reference Type: reference-list

Beauchamp, T. and Childress, J. (2001). Principles of Biomedical Ethics, 5th edn. Oxford: Oxford University Press.
British Medical Association., (1998). Human Genetics: Choice and Responsibility. Oxford: Oxford University Press.
Convention for the Protection of Human Rights and Fundamental Freedoms. http://conventions.coe.int/treaty/en/Treatises/html/005.htm
General Medical Council., (2000). Guidance on Confidentiality. London: GMC. (Also available on GMC website www.gmc-uk.org)
Gillon, R., (1985). Philosophical Medical Ethics. Chichester: Wiley, 106–12.
Gillon, R. (1994). Medical ethics: four principles plus attention to scope. BMJ, 309, 184–8.
Gillon, R. (1998). Confidentiality. In H. Kuhse and P. Singer, eds., A Companion to Bioethics. Oxford: Blackwell, 425–31.
Hare, R. M., (1985). Moral Thinking. Oxford: Oxford University Press.
Universal Declaration of Human Rights. (1948). http://www.un.org/Overview/rights.html

Reference Title: References

Reference Type: reference-list

Agich, G. J. (1981). The question of technology in medicine. In S. Skousgaard, ed., Phenomenology and Understanding Human Destiny. Washington DC: Center for Advanced Research in Phenomenology and University Press of America, 81–92.
Agich, G. J. (1993). Autonomy and Long-Term Care. New York: Oxford University Press, 76–113.
Agich, G. J. (2004). Dependence and Autonomy in Old Age. Cambridge: Cambridge University Press.
Gurwitsch, A. (1978). The Field of Consciousness. Pittsburgh: Duquesne University Press.
Haber, D. (2002). Prophylactic oophorectomy to reduce the risk of ovarian and breast cancer in carriers of BRCA mutations. N Engl J Med, 346(21), 1660–2.
Husserl, E. (1969). Formal and Transcendental Logic (D. Cairns, tr.). The Hague: Martinus Nijhoff.
Husserl, E. (1967). Ideas: General Introduction to a Pure Phenomenology (W. R. B. Gibson, tr.). New York: Collier Books.
Illich, I. (1976). Medical Nemesis: The Expropriation of Health. New York: Pantheon Books.
Kauff, N. D., Satagopan, J. M., Robson, M. E. et al. (2002). Risk-reducing salpingo-oophorectomy in women with BRCA1 or BRCA2 mutation. N Engl J Med, 346 (21), 1609–15.
Rebbeck, T. R., Lynch, H. T., Neuhausen, S. L. et al. (2002). Prophylactic oophorectomy in carriers of BRCA1 or BRCA2 mutations. N Engl J Med, 346(21), 1616–22.
Schutz, A. (1967). Phenomenology of the Social World (G. Walsh and F. Lehnert, trs.). Evanston: Northwestern University Press.
Schutz, A. (1971). Collected Papers. I: The Problem of Social Reality, ed. M. Natanson. The Hague: Martinus Nijhoff, 226–9.
Schutz, A. and Luckman, T. (1973). Structures of the Life-World, (R. M. Zaner and H. T. Englehardt, Jr., trs.). Evanston: Northwestern University Press.
Spiegelberg, H. (1982). The Phenomenological Movement: A Historical Introduction, 3rd edn. rev. The Hague: Martinus Nijhoff.
Zaner, R. M. (1973). Reflections on evidence and criticism in the theory of consciousness. In D. Carr and E. S. Casey, eds., Explorations in Phenomenology. The Hague: Martinus Nijhoff, 184–207.

Reference Title: Bibliography

Reference Type: bibliography

Gurwitsch, A. (1978). Human Encounters in the Social World. Pittsburgh: Duquesne University Press.
Husserl, E. (1999). The Idea of Phenomenology (L. Hardy, tr.). Dordrecht: Kluwer Academic Publishers.
Schutz, A. (1970). Reflections on the Problem of Relevance, ed. R. M. Zaner. New Haven: Yale University Press.
Schutz, A. (1971). Collected Papers. II: Studies in Social Theory, ed. A. Brodersen. The Hague: Martinus Nijhoff.
Schutz, A. (1971). Collected Papers. III: Studies in Phenomenological Philosophy, ed. I. Schutz. The Hague: Martinus Nijhoff.

Reference Title: References

Reference Type: reference-list

Audrain, J., Rimer, B., Cella, D. et al. (1998). Genetic counseling and testing for breast–ovarian cancer susceptibility: what do women want? J Clin Oncol, 16(1), 133–8.
Bartels, D. M., LeRoy, B. S., McCarthy, P. and Caplan, A. L. (1997). Nondirectiveness in genetic counseling: a survey of practitioners. Am J Med Gen, 72(2), 172–9.
Boas, F., (1925). Contributions to the Ethnology of the Kwakiutl. New York: Columbia University Press.
Chalmers, A. F., (1999). What is This Thing Called Science?, 3rd edn. Buckingham: Open University Press.
Chalmers, K. and Thomson, K. (1996). Coming to terms with the risk of breast cancer: perceptions of women with primary relatives with breast cancer. Qualitat Health Res, 6, 256–82.
Chalmers, K., Thomson, K. and Degner, L. F. (1996). Information, support and communication needs of women with a family history of breast cancer. Cancer Nursing, 19, 204–13.
Charmaz, K., (2000). Experiencing chronic illness. In G. L. Albrecht, R. Fitzpatrick and S. C. Scrimshaw, eds., The Handbook of Social Studies in Health and Medicine. London: Sage, 277–92.
Eeles, R. A. (2000). Future possibilities in the prevention of breast cancer: intervention strategies in BRCA1 and BRCA2 mutation carriers. Breast Cancer Res, 2(4), 283–90.
Eeles, R. A., and Powles, T. J. (2000). Chemoprevention options for BRCA1 and BRCA2 mutation carriers. J Clin Oncol, 18(21Suppl.); 93S–99S.
Genetic testings for Cancer: The surgeon's critical role. (1999). J Am Coll Surg 188(1), 74–93. This comprises the following consecutive articles: Vogelstien, B. Familial colon cancer. 74–9; Weber, B. L. Familial breast cancer. 79–86; Greely, H. T. Ethical and legal issues associated with genetic testing. 86–9; and Peterson, G. Clinical cancer genetics 1998 (what's available to you in your practice). 89–93.
Goffman, E., (1963). Stigma. Englewood Cliffs, New Jersey: Prentice Hall.
Hallowell, N., Murton, F., Statham, H., Green, J. M. and Richards, M. P. M. (1997). Women's need for information before attending genetic counselling for familial breast or ovarian cancer: a questionnaire, interview, and observational study. BMJ, 314(7076), 281–3.
Hofferbert, S., Worringen, U., Backe, J., et al. (2000). Simultaneous interdisciplinary counseling in German breast/ovarian cancer families: first experience with patient perceptions, surveillance behavior and acceptance of genetic testing. Genetic Counseling, 11(2), 127–46.
Holm, S., (1997). Ethical Problems in Clinical Practice: The Ethical Reasoning of Health Care Professionals. Manchester: Manchester University Press.
Lodder, L. N., Frets, P. G., Trijsburg, R. W. et al. (1999). Presymptomatic testing for BRCA1 and BRCA2: how distressing are the pre-test weeks? J Med Gen, 36(12), 906–13.
Malinowski, B., (1922). Argonauts of the Western Pacific: An Account of Native Enterprise and Adventure in the Archipelagoes of Melanesian New Guinea. London: Routledge.
Marteau, T. M., Drake, H. and Bobrow, M. (1994). Counselling following diagnosis of fetal abnormality: the differing approaches of obstetricians, clinical geneticists, and genetic nurses. J Med Gen, 31(11), 864–7.
Mauss, M., (1954). The Gift. Forms and Functions of Exchange in Archaic Societies. London: Cohen & West. [Originally Published in French 1923–4.]
McAllister, M. F., Evans, D. G. R., Ormiston, W., and Daly, P. (1998). Men in breast cancer families: a preliminary study of awareness and experience. J Med Gen, 35(9), 739–44.
Michie, S. and Marteau, T. M. (1996). Predictive genetic testing in children: the need for psychological research. Br J Health Psychol, 1, 3–14.
Michie, S., Bron, F., Bobrow, M. and Marteau, T. M. (1997). Nondirectiveness in genetics counseling: an empirical study. Am J Human Gen, 60(1), 40–7.
Morrow, M. and Gradishar, W. (2002). Recent developments: breast cancer. BMJ, 324, 410–14.
Phillips, K. A., Andrulis, I. L. and Goodwin, P. J. (1999). Breast carcinomas arising in carriers of mutations in BRCA1 or BRCA2: are they prognostically different? J Clin Oncol, 17(11), 3653–63.
Rees, C. E. and Bath, P. A. (2000). The information needs and source preferences of women with breast cancer and their family members: a review of the literature published between 1988 and 1998. J Adv Nursing, 31(4), 833–41.
Reichelt, J. G., Dahl, A. A., Heimdal, K. and Møller, P. (1999). Uptake of genetic testing and pre-test levels of mental distress in Norwegian families with known BRCA1 mutations. Dis Markers, 15(1–3), 139–43.
Richards, M., (1996). Families, kinship and genetics. In T. Marteau and M. Richards, eds., The Troubled Helix: Social and Psychological Implications of the New Human Genetics. Cambridge: Cambridge University Press, 249–73.
Sagi, M., Meiner, V., Reshef, N., Dagan, J. and Zlotogora, J. (2001). Prenatal diagnosis of sex chromosome aneuploidy: possible reasons for high rates of pregnancy termination. Prenatal Diag, 21(6), 461–5.
Stacey, M., (1996). The new genetics: a feminist view. In T. Marteau and M. Richards, eds., The Troubled Helix: Social and Psychological Implications of the New Human Genetics. Cambridge: Cambridge University Press, 331–49.
Struewing, J. P., Hartge, P., Wacholder, S. et al. (1997). The risk of cancer associated with specific mutations of BRCA1 and BRCA2 among Ashkenazi Jews. N Engl J Med, 336, 1401–7.
Tercyak, K. P., Hughes, C., Main, D., et al. (2001). Parental communication of BRCA1/2 genetic test results to children. Patient Ed Counsel, 42, 213–24.
Tobias, D. H., Eng, C., McCurdy, L. D. et al. (2000). Founder BRCA1 and 2 mutations among a consecutive series of Ashkenazi Jewish ovarian cancer patients. Gynecol Oncol, 78(2), 148–51.
De Wert, G. (1998). Ethics of predictive DNA testing for hereditary breast and ovarian cancer. Patient Ed Counsel, 35: 43–52.
Wong, C., DiCioccio, R. A., Allen, H. J., Werness, B. A. and Piver, M. S. (1998). Mutations in BRCA1 from fixed, paraffin-embedded tissue can be artifacts of preservation. Cancer Gen Cytogen, 107(1), 21–7.

Reference Title: References

Reference Type: reference-list

Brose, M. S., Rebbeck, T. R., Calzone, K. A. et al. (2002). Cancer risk estimates for BRCA1 mutation carriers identified in a risk evaluation program. J Natl Cancer Inst, 94, 1365–72.
Clarke, A. (1991). Is non-directive genetic counselling possible? Lancet, 338(8773), 998–1001.
Frost, M. H., Schaid, D. J., Sellers, T. A. et al. (2000). Long-term satisfaction and psychological and social function following bilateral prophylactic mastectomy. JAMA, 284(3), 319–24.
Haber, D. (2002). Prophylactic oophorectomy to reduce the risk of ovarian and breast cancer in carriers of BRCA mutations. N Engl J Med, 346(21), 1660–2.
Hartmann, L. C., Schaid, D. J., Woods, J. E. et al. (1999). Efficacy of bilateral prophylactic mastectomy in women with a family history of breast cancer. N Engl J Med, 340(2), 77–84.
Human Genetics Commission. (2002). Inside Information Balancing Interests in the Use of Personal Genetic Data. (May). London.
Julian-Reynier, C., Eisinger, F., Chabal, F. et al. (2000). Disclosure to the family of breast/ovarian cancer genetic test results: patient's willingness and associated factors. Am J Med Gen, 94(1), 13–18.
Kauff, N. D., Satagopan, J. M., Robson, M. E. et al. (2002). Risk-reducing salpingo-oophorectomy in women with BRCA1 or BRCA2 mutation. N Engl J Med, 346(21), 1609–15.
Lucassen, A. M. and Parker, M. (2001). Talking about paternity in the genetic clinic: some ethical considerations. Lancet, 357, 1033–5.
Lucassen, A. M., Watson, E. W. and Eccles, D. (2001). Management of a young woman with a family history of breast cancer. BMJ, 322, 1040–2.
Meijers-Heijboer, H., van Geel, B., van Putten, W. L. et al. (2001). Breast cancer after prophylactic bilateral mastectomy in women with a BRCA1 or BRCA2 mutation. N Engl J Med, 345(3), 159–64.
Meijers-Heijboer, E. J., Brohet, R. M., Asperen, C. J. et al. (2004). Risks of cancer at sites other than breast and ovary among BRCA1 mutation carriers. Familial Cancer, abstr.
Morrow, M. and Gradishar, W. (2002). Breast cancer. BMJ, 324(7334), 410–14.
Rebbeck, T. R., Lynch, H. T., Neuhausen, S. L. et al. (2002). Prophylactic oophorectomy in carriers of BRCA1 or BRCA2 mutations. N Engl J Med, 346(21), 1616–22.
Thompson, D. and Easton, D. F. (2002). Breast cancer linkage consortium: cancer incidence in BRCA1 mutation carriers. J Natl Cancer Inst, 94(18), 1358–65.

Reference Title: References

Reference Type: reference-list

Calvino, I. (1972). Invisible Cities. London: Picador.
Chambers, T. (1999). The Fiction of Bioethics: Cases as Literary Texts. New York: Routledge.
Parker, M. (1995). The Growth of Understanding. Aldershot: Avebury.