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3 - Family access to shared genetic information: an analysis of the narrative

Published online by Cambridge University Press:  01 September 2009

Brian Hurwitz
Affiliation:
D'Oyly Carte Chair of Medicine and the Arts King's College, London
Richard Ashcroft
Affiliation:
Imperial College of Science, Technology and Medicine, London
Anneke Lucassen
Affiliation:
University of Southampton
Michael Parker
Affiliation:
University of Oxford
Marian Verkerk
Affiliation:
Rijksuniversiteit Groningen, The Netherlands
Guy Widdershoven
Affiliation:
Universiteit Maastricht, Netherlands
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Summary

Narratives are the discursive form in which issues in medical ethics are apprehended, and communicated. What stories do ‘is to narrate the life in time’ (Forster 1971), not just in novels, but also in fact. Narrative discourse – ‘someone telling someone else that something happened’ (Smith 1981) – is an archetypal means of relating and reporting what is going on, one which also patterns understanding of events.

Many stories turn on conflicts of value, clashes of principle and the promise of resolution. Literature, understood broadly to include novels, biography, memoirs and journalistic accounts, offers readers and professional ethicists alike, potentially rich representations of situations finely graduated by moral viewpoint, ambiguity and complexity (Widdershoven and Smits 1996, Widdershoven and Sohl 1999). Literature can also depict and explore moral doubts and reasoning, and subject argument, motive and character to the scrutiny of a wide readership. In these ways stories both embody and structure our encounters with notions of ‘right’ and ‘wrong’ (MacIntyre 1981: 201, Guroian 1998).

Some narrative scholars argue that ‘the most interesting parts of the moral world have to be ‘read’, rendered, construed, glossed, elucidated, and not merely described’ (Walzer 1987) and find that novelists have more to teach them than philosophers about how to grapple with moral complexities (Booth 2002). Comprehending the moral content of stories involves making sense of feelings, thoughts and behaviour which engage narrative skills, knowledge of the fine grain of medical case histories and some fluency in philosophical analysis too (Levine 1998: 43).

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Publisher: Cambridge University Press
Print publication year: 2005

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References

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 Charon, R. and Montello, M., eds. Stories Matter. New York and London: Routledge.Google Scholar
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.CrossRefGoogle Scholar
Chambers, T. S. (1999). The Fiction of Bioethics: Cases as Literary Texts. New York: Routledge.Google Scholar
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.Google Scholar
Forster, E. M. (1971). Aspects of the Novel. Harmondsworth, Middx: Penguin Books.Google Scholar
Glover, J. (1999). Humanity: A Moral History of the Twentieth Century. London: Jonathan Cape.Google Scholar
Greenhalgh, T. and Hurwitz, B., eds., (1998). Narrative-Based Medicine. London: BMJ Books.Google Scholar
Guroian, V. (1998). Tending the Heart of Virtue. Oxford: OUP.Google Scholar
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.CrossRefGoogle Scholar
Hurwitz, B. (2002). Informed consent and access to personal medical records for the purposes of health services research. In Doyal, L. and Tobias, J., eds., Informed Consent in Medical Research. London: BMJ Books, 230–9.Google Scholar
King, N. M. P. and Stanford, A. F. (1992). Patient stories, doctor stories, and true stories: a cautionary reading. Lit Med, 11, 185–99.CrossRefGoogle ScholarPubMed
Levine, P. (1998). Living Without Philosophy: On Narrative, Rhetoric, and Morality. Albany: State University of New York Press.Google Scholar
MacIntyre, A. (1981). After Virtue: A Study in Moral Theory. London: Duckworth.Google Scholar
Morgan, D. (2001). Issues in Medical Law and Ethics. London: Cavendish.Google Scholar
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 Fitzgerald, S. and Fitzgerald, R.. London: Faber & Faber.Google Scholar
Pellegrino, E. D. (1997). Bioethics as an interdisciplinary enterprise: where does ethics fit in the mosaic of disciplines? In Carson, R. A. and Burns, C. R., eds., Philosophy of Medicine and Bioethics. Dordrecht: Kluwer, 1–23.CrossRefGoogle Scholar
Smith, H. B. (1981). Narrative versions, narrative theories. In Mitchell, W. J. T., ed., On Narrative. Chicago: University of Chicago Press, 209–32.Google Scholar
Uspensky, B. (1973). A Poetics of Composition. Berkeley: University of California Press.Google Scholar
Walzer, M. (1987). Interpretation and Social Criticism. Cambridge, Mass.: Harvard University Press.Google Scholar
Widdowshoven, G. A. M. and Smits, M.-J. (1996). Ethics and narratives. In Josselson, R., ed., Ethics and Process in the Narrative Study of Lives, vol. 4. Newburypark: Sage, 275–87.CrossRefGoogle Scholar
Widdershoven, G. and Sohl, C. (1999). Interpretation, communication and action. Four stories about supported employment. In Abma, T. A., ed., Telling Tales; On Evaluation and Narrative. Advances in Program Evaluation, Vol. 6. Greenwich, Conn.: JAI Press 109–130.Google Scholar
Wolf, S. M. (1986). Feminism and Bioethics. New York: OUP.Google Scholar

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