Advertisement

Monash Bioethics Review

, Volume 29, Issue 3, pp 31–42 | Cite as

Ethical Tensions in Genetic Counselling Research

  • Mary-Anne Young
Article

Abstract

Ethical tensions are recognised as part of the everyday practice of conducting research and practising genetic counselling. What are the conceptual frameworks that can assist researchers and genetic counsellors to deal with ethical tensions when conducting research? How might the overlap that arises from being a researcher and clinical genetic counsellor be dealt with? This article uses a case study to consider the ethical tensions between conducting research in genetic counselling and maintaining a clinical practice as a genetic counsellor. It examines the reconciliation of the dual roles of researcher and genetic counsellor. It explores conceptual frameworks that can combine the needs of ethical research practice, while maintaining ethical clinical practice.

Keywords

Genetic Counsellor Ethical Dilemma Role Conflict MONASH Bioethic Review Research Interview 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.

Preview

Unable to display preview. Download preview PDF.

Unable to display preview. Download preview PDF.

References

  1. Antoniou, A; Pharoah, PD; Narod, S, et al. 2003. Average risks of breast and ovarian cancer associated with BRCA1 or BRCA2 mutations detected in case Series unselected for family history: a combined analysis of 22 studies. American Journal of Human Genetics 72: 1117–30.CrossRefGoogle Scholar
  2. Batchelor, JA; Briggs, CM. 1994. Subject, project or self? Thoughts on ethical dilemmas for social and medical researchers. Social Science and Medicine 39(7): 949–54.CrossRefGoogle Scholar
  3. Beeson, D. 1997. Nuance, complexity and context: qualitative methods in genetic counselling. Journal of Genetic Counselling 1(6): 21–43.CrossRefGoogle Scholar
  4. Carolan, M. 2003. Reflexivity: a personal journey during data collection. Nurse Researcher 10(3): 7–14.CrossRefGoogle Scholar
  5. Galvin, KM; Young, M-A. 2010. Family systems theory. In Family Communication About Genetics: Theory and Practice, eds C. Gaff, C. Bylund, pp. 102–19. New York: Oxford University Press.Google Scholar
  6. Gillam, L. 2004. Expertise in research ethics: is there any such thing? Monash Bioethics Review 23(3): 58–64.CrossRefGoogle Scholar
  7. Gillam, L; Little, JM. 2001. Confidentiality. Medical Journal of Australia 174(6): 296–7.Google Scholar
  8. Guillemin, M; Gillam, L. 2004. Ethics, reflexivity and ‘ethically important moments’ in research. Qualitative Inquiry 10(2): 261–80.CrossRefGoogle Scholar
  9. Hutchinson, S; Wilson, H. 1994. Critical Issues in Qualitative Research Methods. Thousand Oaks: Sage Publications.Google Scholar
  10. Kavanaugh, K; Ayres, L. 1998. ‘Not as bad as it could have been’: assessing and mitigating harm during research interviews on sensitive topics. Research in Nursing and Health 21(1): 91–7.CrossRefGoogle Scholar
  11. Lipson, J. 1984. Combining researcher, clinical and personal roles: enrichment or confusion? Human Organization 4(43): 348–52.Google Scholar
  12. Loukas, A; Twitchekk, GR; Piejack, LA; Fitzgerald, HE; Zucker, RA. 1998. The family as a unit of interacting personalities. In Family Psychopathology: The Relational Roots of Dysfunctional Behavior, ed. L. L’Abate, pp. 35–59. New York: Guilford Press.Google Scholar
  13. Morse, J; Richards, L. 2002. Readme First for a User’s Guide to Qualitative Methods. California: Sage Publications.Google Scholar
  14. Rice, P; Ezzy, D. 1999. Qualitative Research Methods: A Health Focus. Oxford: Oxford University Press.Google Scholar
  15. Sahhar, MA; Young, M-A; Sheffield, LJ; Aitken, MA. 2005. Educating genetic counselors in Australia: developing an international perspective. Journal of Genetic Counselling 14(4): 283–294.CrossRefGoogle Scholar
  16. Sarangi, S; Bennert, K; Howell, L, et al. 2005. (Mis)alignments in counselling for Huntington’s Disease predictive testing: clients’ responses to reflective frames. Journal of Genetic Counselling 14(1): 29–42.CrossRefGoogle Scholar
  17. Sarantakos, M. 1998. Social Research. Melbourne: McMillan Education Australia.Google Scholar

Copyright information

© Monash University 2011

Authors and Affiliations

  1. 1.Centre for Health and Society, and Department of PediatricsUniversity of MelbourneAustralia
  2. 2.Genetics Education and Health Research, Murdoch Childrens Research InstituteRoyal Childrens HospitalMelbourne
  3. 3.Familial Cancer CentrePeter MacCallum Cancer CentreEast MelbourneAustralia

Personalised recommendations