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Communicating genetic information in the family: enriching the debate through the notion of integrity

Abstract

Genetic information about one individual often has medical and reproductive implications for that individual’s relatives. There is a debate about whether policy on transmitting genetic information within the family should change to reflect this shared aspect of genetic information. Even if laws on medical confidentiality remain unchanged, there still remains the question of professional practice and whether, to what extent and by what means professionals should encourage disclosure within a family. The debate so far has tended to focus on who has a right to genetic information, or has a right to decline genetic information, frequently drawing on the notion of individual autonomy. There are significant divergences within this debate, and difficulties with the use of autonomy in this context have been noted. This paper draws on theoretical considerations as well as on qualitative empirical data to show that shifting from talk of autonomy to talk of integrity will greatly enrich and illuminate the issues. It becomes possible to gain deeper insights into the ethical significance of the timing and the manner of such communication, the character of recipients of knowledge, and the nuanced nature of communication and different levels of understanding within a family.

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Notes

  1. Nesbitt (1991), 85.

  2. We have surveyed the literature extensively, and autonomy is repeatedly given a prominent place in discussions. See for example: Harris and Keywood (2001): this article lists as key words ‘autonomy, ignorance, information, rights’. Also in the same edition, see Bennett (2001): this lists as key words ‘autonomy, consent, coercion, harm, pre-natal genetic testing’.

  3. See for example Häyry and Takala (2001).

  4. See for example Takala (2001).

  5. See for example Mason et al. (2002); also Case (2003).

  6. For an overview see Boddington (1998). See also McLaughlin and Rorty (1988).

  7. See for example Gabriele Taylor (1981). Taylor argues that the self-deceived person is the most fundamental case of loss of integrity, p. 149.

  8. See e.g. Gaita (1981), Taylor. op. cit. xiv (1981), Cox et al. (2003).

  9. Fjellstrom, Roger (2005), 233–234.

  10. Sidaway v Bethlem RHG, [1985] 1 All ER 643, 666 per Lord Templeham.

  11. Takala (2001) op. cit. ix. ‘Being in control of one’s life can in that case require some degree of self-chosen ignorance’, p. 487.

  12. The significance of this is discussed more fully below with reference to time and information giving.

  13. The convention used in the reporting of data here (where a pseudonym has not been assigned to the speaker) is that the father is designated by the letter F, the mother by the letter M, and a daughter by the letter D.

  14. An influential account of self-deception that makes central use of the notion of ‘spelling out’ beliefs is found in Fingarette (1969).

  15. See e.g. Jacob Dahl Rendtorff. op. cit. xii: 237: ‘Integrity is a coherence that in a certain sense must not be touched. This coherence, or rather “Lebenszusammenhang” is the narrative coherence of a person’s life (the life story) or the narrative (historical) unity of human culture.’

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Acknowledgements

This work forms part of the project, “The Transgenerational Communication of Genetic Information”, funded by the Wellcome Trust Programme in Biomedical Ethics (award 072141/A/03/Z). We are grateful to the participants who agreed to be interviewed, to Alan Eldridge of the Arthur Bloom Haemophilia Centre, University Hospital of Wales, Cardiff, who provided significant assistance in identifying families for recruitment to this project, and to Rebecca Dimond for interviewing families, some of whose interview extracts are reported here. We acknowledge the Principal Investigators of this project, Professor Angus Clarke and Professor Paul Atkinson, and Dr. Peter Collins also of the Arthur Bloom Haemophilia Centre.

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Correspondence to Paula Boddington.

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The relevant ethical approval for this work was given by the Multi-Centre Research Ethics Committee for Wales and by the Research & Development Committee of the appropriate hospital trust.

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Boddington, P., Gregory, M. Communicating genetic information in the family: enriching the debate through the notion of integrity. Med Health Care and Philos 11, 445–454 (2008). https://doi.org/10.1007/s11019-008-9132-4

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Keywords

  • Autonomy
  • Biomedical ethics
  • Communication
  • Family
  • Genetics
  • Integrity