Skip to main content
SpringerLink
Log in

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

  • Scientific Contribution
  • Published:
Medicine, Health Care and Philosophy Aims and scope Submit manuscript

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.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

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.’

References

  • Beauchamp Tom L., and James Childress. 1994. Principles of biomedical ethics, 4th ed. New York: Oxford University Press.

    Google Scholar 

  • Bell, Dean, and Belinda Bennett. 2001. Genetic secrets and the family. Medical Law Review 9: 130.

    Article  PubMed  CAS  Google Scholar 

  • Bennett, Rebecca. 2001. Antenatal genetic testing and the right to remain in ignorance. Theoretical Medicine 22: 461–471.

    Article  CAS  Google Scholar 

  • Boddington, Paula. 1998. Self-deception. In Encyclopedia of applied ethics, ed. Ruth Chadwick, 39–51, vol. 4. San Diego: Academic Press, Inc.

  • Case, Paula. 2003. Confidence matters: the rise and fall of informational autonomy in medical law, Medical Law Review 11: 208.

    Article  PubMed  Google Scholar 

  • Chadwick, Ruth, Levitt, Mairi, and Darren Shickle, eds. 1998. The right to know and the right not to know. Ashgate: Aldershot.

    Google Scholar 

  • Cox, Damian, Marguerite La Caze, and Michael P. Levine. 2003. Integrity and the fragile self. Ashgate: Aldershot.

    Google Scholar 

  • Fingarette, Herbert. 1969. Self-deception. London, Routledge and Kegan Paul.

  • Fjellstrom, Roger. 2005. Respect for persons, respect for integrity. Medicine, Health Care and Philosophy 8: 231–242.

    Article  Google Scholar 

  • Gaita, Raymond. 1981. Integrity. In Aristotelian society supplementary, vol. LV: 161–176.

  • Hallowell N., Ardern Jones A., Eeles R., Foster C., Lucassen A., Moynihan C., and M. Watson. 2005. Men’s decision making about predictive BRCA1/2 testing: the role of the family. Journal of Genetic Counselling 14 (3): 207.

    Article  CAS  Google Scholar 

  • Harris, John, and Kirsty Keywood. 2001. Ignorance, information and autonomy. Theoretical Medicine 22: 415–436.

    Article  CAS  Google Scholar 

  • Häyry, Matti, and Tuija Takala. 2001. Genetic information, rights and autonomy. Theoretical Medicine 22: 403–414.

    Article  Google Scholar 

  • Laurie, Graeme. 1999. Obligations arising from genetic information: negligence and the protection of family interests. Child and Family Law Quarterly 11 (2): 109.

    Google Scholar 

  • Mason J.K., McCall Smith R.A., and G.T. Laurie. 2002. Law and medical ethics, 6th ed. London: Butterworths.

    Google Scholar 

  • McLaughlin, Brian P., and Amelie Oksenberg Rorty. 1988. Perspectives on self-deception. Berkeley and Los Angeles: University of California Press.

    Google Scholar 

  • Nesbitt, E. 1991. The railway children. Oxford: Oxford University Press.

    Google Scholar 

  • Räikkä, Juha. 1998. Freedom and a right (not) to know. Bioethics 12: 49–63.

    Article  PubMed  Google Scholar 

  • Rendtorff, Jacob Dahl. 2000. Basic ethical principles in European bioethics and biolaw: Autonomy, dignity, integrity and vulnerability–towards a foundation of bioethics and biolaw. Medicine, Health Care and Philosophy 5: 235–244.

    Article  Google Scholar 

  • Rhodes, Rosamund. 1998. Genetic links, family ties and social bonds: Rights and responsibilities in the face of genetic knowledge. Journal of Medicine and Philosophy 23: 10–30.

    Article  PubMed  CAS  Google Scholar 

  • Rhodes, Rosamund. 2000. Autonomy respect and genetic information policy: A reply to Tuija Takala and Matti Häyry. Journal of Medicine and Philosophy 25: 114–120.

    Article  PubMed  Google Scholar 

  • Skene, Loane. 2001. Genetic secrets and the family: A response to Bell and Bennett. Medical Law Review 9: 162.

    Article  PubMed  CAS  Google Scholar 

  • Takala, Tuija. 2001. Genetic ignorance and reasonable paternalism. Theoretical Medicine 22: 485–491.

    Article  CAS  Google Scholar 

  • Takala, Tuija, and Matti Häyry. 2000. Genetic ignorance, moral obligations and social duties. Journal of Medicine and Philosophy 25: 107–113.

    Article  PubMed  CAS  Google Scholar 

  • Taylor, Gabriele. 1981. Integrity. In Aristotelian society supplementary Vol. LV: 143–159.

  • Vehmas, Simo. 2001. Just ignore it? Parents and genetic information. Theoretical Medicine 22: 473–484.

    Article  CAS  Google Scholar 

  • Voysey, Margaret. 1975. A constant burden: the reconstitution of family life. London: Routledge and Kegan Paul.

    Google Scholar 

Download references

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.

Author information

Authors and Affiliations

  1. Ethox Centre, Oxford University, Badenoch Building, Old Road Campus, Headington, Oxford, OX3 7LF, UK

    Paula Boddington

  2. School of Social Sciences, Cardiff University, Glamorgan Building, King Edward VII Avenue, Cardiff, CF10 3WT, UK

    Maggie Gregory

Authors
  1. Paula Boddington
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Maggie Gregory
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Paula Boddington.

Additional information

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.

Rights and permissions

Reprints and permissions

About this article

Cite this article

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

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s11019-008-9132-4

Keywords

Search

Navigation