Advertisement

Journal of Genetic Counseling

, Volume 15, Issue 4, pp 253–265 | Cite as

What Do We Tell the Children? Contrasting the Disclosure Choices of Two HD Families Regarding Risk Statusand Predictive Genetic Testing

  • Kathryn Holt
Original Research
First Online:

Above all else, predictive genetic testing provides information. Gaining insight into the psychosocial effects of this information is a primary goal of genetic counseling. For individuals utilizing predictive genetic testing, the acquisition of genetic information requires choices regarding disclosure within the family. This study uses a phenomenological methodology to explore the contrasting choices of two sets of HD parents regarding the disclosure of genetic risk status to their children. Additionally, the children (now adults) discuss their lived experience growing up with contrasting disclosure dynamics, and their current views regarding the use of predictive genetic testing for themselves. The primary finding of this study is that all of the adult children now express preference for early disclosure of genetic risk and an open/supportive communication style regarding HD. This finding has value for clinicians working with HD families who must make decisions regarding disclosure issues related to predictive genetic testing.

KEY WORDS:

communication disclosure family communication genetic counseling genetic testing Huntington's Disease qualitative predictive genetic testing risk statusIntroduction. 
This is a preview of subscription content, log in to check access.

Notes

ACKNOWLEDGMENTS

No grant or financial support was provided for this study.

References

  1. Agan, N., & Gregg, A. R. (2002). Elements of a genetics counseling service. Obstet Gynecol Clin North Amer, 29, 255.CrossRefGoogle Scholar
  2. Bowen, D. J., Bourcier, E., Press, N., Lewis, F. M., & Burke, W. (2004). Effects of individual and family functioning on interest in genetic testing. Commun Genet, 7, 25.CrossRefGoogle Scholar
  3. Broadstock, M., Michie, S., & Marteau, T. M. (2000). The psychological consequences of predictive genetic testing: A systematic review. Eur J Hum Genet, 8, 731.PubMedCrossRefGoogle Scholar
  4. Brouwer-DudokdeWit, A. C., Savenije, A., Zoeteweij, M. W., Maat-Kievit, A., & Tibben, A. (2002). A hereditary disorder in the family and the family life cycle: Huntington disease as a paradigm. Fam Proc, 41, 677.CrossRefGoogle Scholar
  5. Bury, M. R. (1991). The sociology of chronic illness: A review of research and prospects. Sociol Health Illness, 13, 451.CrossRefGoogle Scholar
  6. Chaffee, S. H., & McLeod, J. M. (1972). Adolescent television used in the family context. In G. A. Comstock & E. A. Rubinstein (Eds.), Television and social behavior: Volume 3. Television and adolescent aggression (DHEW Publication No. HSM 72-9058, pp. 149–172). Washington, DC: US Government Printing Office.Google Scholar
  7. Chapman, E. (2002). Ethical dilemmas in testing for late onset conditions: Reactions to testing and perceived impact on other family members. J Genet Counsel, 11, 351.CrossRefGoogle Scholar
  8. Chapman, E., & Smith, J. A. (2002). Interpretative Phenomenological Analysis and the new genetics. J Health Psychol, 7, 125.CrossRefGoogle Scholar
  9. Croyle, R. T., & Lerman, C. (1999). Risk communication in genetic testing for cancer susceptibility. J Nat Cancer Inst Monogr, 25, 59.Google Scholar
  10. d’Agincourt-Canning, L. (2001). Experiences of genetic risk: Disclosure and the gendering of responsibility. Bioethics, 15, 231.PubMedCrossRefGoogle Scholar
  11. Dawson, S., Kristjanson, L. J., Toye, C. M., & Flett, P. (2004). Living with Huntington's disease: Need for supportive care. Nurs Health Sci, 6, 123.PubMedCrossRefGoogle Scholar
  12. Evers-Kiebooms, G., Nys, K., Harper, P., Zoeteweij, M., Durr, A., Jacopini, G., et al. (2002). Predictive DNA testing for Huntington's disease and reproductive decision making: A European collaborative study. Eur J Hum Genet, 10, 167.PubMedCrossRefGoogle Scholar
  13. Forrest, K., Simpson, S. A., Wilson, B. J., van Teiflingen, E. R., McKee, L., Haites, N., et al. (2003). To tell or not to tell: Barriers and facilitators in family communication about genetic risk. Clin Genet, 64, 317.PubMedCrossRefGoogle Scholar
  14. Hagoel, L., Dishon, S., Almog, R., Silman, Z., Bisland-Becktell, S., & Rennert, G. (2000). Proband family uptake of familial-genetic counseling. Psychooncology, 9, 522.PubMedCrossRefGoogle Scholar
  15. HDSA (2005). Fast Facts about HD. Huntington's Disease Society of America. Website. Retrieved on 2/1/2006 from http://www.hdsa.org/site/PageServer?pagename=help_info_ ed_publications_for_downloadGoogle Scholar
  16. Kenen, R., Ardern-Jones, A., & Eeles, R. (2004). We are talking, but are they listening? Communication patterns in families with a history of breast/ovarian cancer (HBOC). Psychooncology, 13, 335.PubMedCrossRefGoogle Scholar
  17. Kent, A. (2004). Huntington's disease. Nurs Stand., 18, 45.PubMedGoogle Scholar
  18. MacMillan, J. C., & Snell, R. G. (1993). Molecular analysis and clinical correlations of the Huntington's disease mutation. Lancet, 342, 954.PubMedCrossRefGoogle Scholar
  19. Moustakas, C. (1994). Phenomenological research methods. Thousand Oaks, CA: Sage.Google Scholar
  20. Riesch, S. K., Henriques, J., & Chanchong, W. (2003). Effects of communication skills training on parents and young adolescents from extreme family types. J Child Adolesc Psychiatr Nurs, 16, 162.PubMedCrossRefGoogle Scholar
  21. Ritchie, L. D. (1991). Family communication patterns: An epistemic analysis and conceptual reinterpretation. Commun Res, 18, 548–565.CrossRefGoogle Scholar
  22. Sanders, T., Campbell, R., Sharp, D., & Donovan, J. (2003). Risk constructions among people who have a first-degree relative with cancer. Health, Risk, Soc, 5, 53.CrossRefGoogle Scholar
  23. Sarangi, S., Bennert, K., Howell, L., Clarke, A., Harper, P., & Gray, J. (2004). Initiation of reflective frames in counseling for Huntington's disease predictive testing. J Genet Counsel, 13, 135.CrossRefGoogle Scholar
  24. Smith, J. A. (2004). Reflecting on the development of Interpretative Phenomenological Analysis and its contribution to qualitative research in psychology. Qual Res Psychol, 1, 39.Google Scholar
  25. Smith, J. A., & Osborn, M. (2003). Interpretative phenomenological analysis. In J. A. Smith (Ed.), Qualitative psychology (pp.51–80). London: Sage.Google Scholar
  26. Sobel, S. K., & Brookes Cowan, D. (2000). Impact of genetic testing for Huntington's disease on the family system. Am J Med Genet, 90, 49.PubMedCrossRefGoogle Scholar
  27. Sobel, S., & Brookes Cowan, C. (2003). Ambiguous loss and disenfranchised grief: The impact of DNA predictive testing on the family as a system. Fam Proc, 42, 47.CrossRefGoogle Scholar
  28. Williams, J. K., & Schutte, D. L. (2000). Genetic testing and mental health: The model of Huntington's disease. Online JIssu Nurs, 5, retrieved on May 4, 2004, from http://www.nursingworld.org/ojin/topic13/tpc13_4 .htmGoogle Scholar
  29. Wilson, B. J., Forrest, K., van Teijlingen, E. R., McKee, L., Haites, N., Matthews, E., et al. (2004). Family communication about genetic risk: The little that is known. Commun Genet, 7, 15.CrossRefGoogle Scholar
  30. Wood, B. E., Kim, K. K., & Harpold, G. J. (2002). Psychiatric management of Huntington's disease in extended care settings. Psychiatr Serv, 53, 703.PubMedCrossRefGoogle Scholar
  31. Young, A. B. (2003). Huntingtin in health and disease. J Clin Investig, 111, 299.Google Scholar

Copyright information

© National Society of Genetic Counselors, Inc. 2006

Authors and Affiliations

  1. 1.Harold Abel School of PsychologyCapella UniversityMinneapolisUSA
  2. 2.PhD, LPC, NCC, 221 E. AdamsTaylorvilleIllinoisUSA

Personalised recommendations