Skip to main content
SpringerLink
Log in

A Genetic Counseling Intervention to Facilitate Family Communication About Inherited Conditions

  • Original Research
  • Published:
Journal of Genetic Counseling

Abstract

This paper describes the development and implementation of the first intervention to facilitate family communication of genetic information based on a genetic counseling model of practice. The intervention is telephone-based and therefore designed to complement face-to-face genetic counseling consultations. It was developed by firstly reviewing the literature and a model of genetic counseling practice, leading to definition of seven core principles underpinning the intervention. A counseling framework based on these principles was developed through iterative role playing and review, tested for consistency with good practice and piloted on ten study participants. It was found to be feasible to implement and consistent with good genetic counseling practice. Implementation included training of the genetic counselors who would deliver the intervention as part of a randomized controlled trial. Noteworthy deviations from good genetic counseling practice were observed, with unexpected additional insights into the ‘black box’ of genetic counseling that may have wider implications and would benefit from further investigation. The intervention is currently being evaluated in a randomized controlled trial, to assess its impact on the number of family members attending genetic services.

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

Fig. 1

Similar content being viewed by others

Notes

  1. For brevity, the information comes from the systematic review by Gaff et al. (2007), unless stated otherwise.

  2. Key to transcription. Audiotapes were transcribed verbatim. C = genetic counselor, P = participant. For ease of reading some quotes have been truncated without changing the meaning. ….. denotes where this has occurred.

References

  • Biesecker, B. B., & Peters, K. F. (2001). Process studies in genetic counseling: peering into the black box. American Journal of Medical Genetics, 106(3), 191–198.

    Article  CAS  PubMed  Google Scholar 

  • Chivers Seymour, K., Addington-Hall, J., Lucassen, A. M., & Foster, C. L. (2010). What facilitates or impedes family communication following genetic testing for cancer risk? A systematic review and meta-synthesis of primary qualitative research. Journal of Genetic Counseling, 19(4), 330–342.

    Article  PubMed  Google Scholar 

  • Craig, P., Dieppe, P., Macintyre, S., Mitchie, S., Nazareth, I., & Petticrew, M. (2008). Developing and evaluating complex interventions: the new Medical Research Council guidance. British Medical Journal (International Edition), 337(7676), 979–983.

    Google Scholar 

  • Daly, M., Barsevick, A., Miller, S., Buckman, R., Costalas, J., Montgomery, S., & Bingler, R. (2001). Communicating genetic test results to the family: a six step, skills building strategy. Family and Community Health, 24(3), 13–26.

    Article  CAS  PubMed  Google Scholar 

  • De Geus, E., Aalfs, C. M., Menko, F. H., Sijmons, R. H., de Haes, J. C. J. M., & Smets, E. M. A. (2012). Sharing genetic cancer information with relatives: development of an instrument to assess counselees’ knowledge, motivation and self-efficacy. European Journal of Human Genetics, 20(1), 430.

    Google Scholar 

  • Egan, G. (2002). The skilled helper (7th ed.). Pacific Grove: Brookes/Cole.

    Google Scholar 

  • Forrest, K., Simpson, S. A., Wilson, B. J., van Teijlingen, E. R., McKee, L., Haites, N., & Matthews, E. (2003). To tell or not to tell: barriers and facilitators in family communication about genetic risk. Clinical Genetics, 64(4), 317–326.

    Article  CAS  PubMed  Google Scholar 

  • Forrest, L. E., Delatycki, M. B., Skene, L., & Aitken, M. (2007). Communicating genetic information in families–a review of guidelines and position papers. European Journal of Human Genetics, 15(6), 612–618.

    Article  PubMed  Google Scholar 

  • Forrest, L. E., Burke, J., Bacic, S., & Amor, D. J. (2008a). Increased genetic counseling support improves communication of genetic information in families. Genetics in Medicine, 10(3), 167–172.

    Article  PubMed  Google Scholar 

  • Forrest, L. E., Curnow, L., Delatycki, M. B., Skene, L., & Aitken, M. (2008b). Health first, genetics second: exploring families’ experiences of communicating genetic information. European Journal of Human Genetics, 16(11), 1329–1335.

    Article  PubMed  Google Scholar 

  • Forrest, L. E., Delatycki, M. B., Curnow, L., Skene, L., & Aitken, M. (2010). Genetic health professionals and the communication of genetic information in families: practice during and after a genetic consultation. American Journal of Medical Genetics Part A, 152A(6), 1458–1466.

    PubMed  Google Scholar 

  • Gaff, C. L., Collins, V., Symes, T., & Halliday, J. (2005). Facilitating family communication about predictive genetic testing: probands’ perceptions. Journal of Genetic Counseling, 14(2), 133–140.

    Article  PubMed  Google Scholar 

  • Gaff, C. L., Clarke, A. J., Atkinson, P., Sivell, S., Elwyn, G., Iredale, R., & Edwards, A. (2007). Process and outcome in communication of genetic information within families: a systematic review. European Journal of Human Genetics, 15(10), 999–1011.

    Article  PubMed  Google Scholar 

  • Gaff, C. L., Galvin, K. M., & Bylund, C. L. (2010). Facilitating family communication about genetics in practice. In C. L. Gaff & C. L. Bylund (Eds.), Family communication about genetics: Theory and practice (pp. 243–272). NY: Oxford University Press.

    Google Scholar 

  • Godard, B., Hurlimann, T., Letendre, M., & Egalite, N. (2006). Guidelines for disclosing genetic information to family members: from development to use. Familial Cancer, 5(1), 103–116.

    Article  PubMed  Google Scholar 

  • Hodgson, J., & Gaff, C. (2013). Enhancing family communication about genetics: ethical and professional dilemmas. Journal of Genetic Counseling, 22(1), 16–21.

    Article  PubMed  Google Scholar 

  • Kessler, S. (1997). Psychological aspects of genetic counseling. IX. Teaching and counseling. Genetic Counseling, 6(3), 287–295.

    Article  CAS  Google Scholar 

  • Koehly, L. M., Peterson, S. K., Watts, B. G., Kempf, K. K., Vernon, S. W., & Gritz, E. R. (2003). A social network analysis of communication about hereditary nonpolyposis colorectal cancer genetic testing and family functioning. Cancer Epidemiology, Biomarkers and Prevention, 12(4), 304–313.

    PubMed  Google Scholar 

  • Koerner, A. F., LeRoy, B., & McCarthy Veach, P. (2010). Family communication patterns. In C. L. Gaff & C. L. Bylund (Eds.), Family communication about genetics: Theory and practice (pp. 184–198). New York: Oxford University Press.

    Google Scholar 

  • Montgomery, S. V., Barsevick, A. M., Egleston, B. L., Bingler, R., Ruth, K., Miller, S. M., & Daly, M. B. (2013). Preparing individuals to communicate genetic test results to their relatives: report of a randomized control trial. Familial Cancer, 12(3), 537–546.

    Article  PubMed  PubMed Central  Google Scholar 

  • Plantinga, L., Natowicz, M. R., Kass, N. E., Hull, S. C., Gostin, L. O., & Faden, R. R. (2003). Disclosure, confidentiality, and families: experiences and attitudes of those with genetic versus nongenetic medical conditions. American Journal of Medical Genetics, 119C(1), 51–59.

    Article  PubMed  Google Scholar 

  • Resta, R., Biesecker, B. B., Bennett, R. L., Blum, S., Hahn, S. E., Strecker, M. N., & Williams, J. L. (2006). A new definition of Genetic Counseling: National Society of Genetic Counselors’ Task Force report. Journal of Genetic Counseling, 15(2), 77–83.

    Article  PubMed  Google Scholar 

  • Rollnick, S., Miller, W. R., & Butler, C. (2008). Motivational interviewing in health care. New York: The Guilford Press.

    Google Scholar 

  • Schmuckler, M. A. (2001). What is ecological validity? A dimensional analysis. Infancy, 2(4), 419–436.

    Article  PubMed  Google Scholar 

  • Suthers, G. K., Armstrong, J., McCormack, J., & Trott, D. (2006). Letting the family know: balancing ethics and effectiveness when notifying relatives about genetic testing for a familial disorder. Journal of Medical Genetics, 43(8), 665–670.

    Article  CAS  PubMed  Google Scholar 

  • Thorpe, K. E., Zwarenstein, M., Oxman, A. D., Treweek, S., Furberg, C. D., Altman, D. G., & Chalkidou, K. (2009). A pragmatic–explanatory continuum indicator summary (PRECIS): a tool to help trial designers. Canadian Medical Association Journal, 180(10), E47–E57.

    Article  PubMed  PubMed Central  Google Scholar 

  • Veach, P. M., Bartels, D. M., & Leroy, B. S. (2007). Coming full circle: a reciprocal-engagement model of genetic counseling practice. Journal of Genetic Counseling, 16(6), 713–728.

    Article  PubMed  Google Scholar 

  • Wiseman, M., Dancyger, C., & Michie, S. (2010). Communicating genetic risk information within families: a review. Familial Cancer, 9(4), 691–703.

    Article  PubMed  Google Scholar 

Download references

Acknowledgments

The authors would like to thank Loren Plunkett and Jean Paul for transcription of the role plays and pilot calls. Jean Paul also assisted with training of the genetic counselors. Our thanks to the genetic counselors involved for their enthusiasm and participation and to the GIF project steering committee (Jane Halliday, MaryAnne Aitken, Sylvia Metcalfe, Martin Delatycki, Susan Donath, Ingrid Winship and Loane Skene). The authors acknowledge the funding provided by the National Health and Medical Research Council (NHMRC) Project ID 491214 – Communication of genetic information within families (The GIF project).

This work was supported by the Victorian Government’s Operational Infrastructure Support Program.

Conflict of Interest

The authors declare they have no conflict of interest.

Author information

Authors and Affiliations

  1. Murdoch Childrens Research Institute, Flemington Road, Parkville, 3050, Melbourne, Victoria, Australia

    Clara Gaff & Jan Hodgson

  2. Department of Paediatrics, University of Melbourne, Melbourne, Australia

    Clara Gaff & Jan Hodgson

  3. Department of Medicine, University of Melbourne, Melbourne, Australia

    Clara Gaff

  4. Walter and Eliza Hall Institute of Medical Research, Melbourne, Australia

    Clara Gaff

Authors
  1. Clara Gaff
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Jan Hodgson
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Clara Gaff.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Gaff, C., Hodgson, J. A Genetic Counseling Intervention to Facilitate Family Communication About Inherited Conditions. J Genet Counsel 23, 814–823 (2014). https://doi.org/10.1007/s10897-014-9696-5

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10897-014-9696-5

Keywords

Search

Navigation