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Enhancing Family Communication About Genetics: Ethical and Professional Dilemmas

  • Professional Issues
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Journal of Genetic Counseling

Abstract

When a new genetic condition is diagnosed within a family, genetic counselors often describe a sense of responsibility towards other at risk family members to be appropriately informed about their status. Successful communication of genetic information in families is contingent on many factors. While a small number of probands directly state their intention not to inform their relatives, many who do intend to communicate this information appear to be unsuccessful for a wide range of reasons and may benefit from follow up support from a genetic counselor. Drawing on the reciprocal-engagement model (REM) of genetic counseling practice we explore how enhancing family communication about genetics raises a number of ethical and professional challenges for counselors—and describe how we resolved these. A subsequent manuscript will describe the counseling framework we have developed to enhance family communication about genetics.

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Acknowledgments

The authors would like to 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.

Author information

Authors and Affiliations

  1. Murdoch Childrens Research Institute, Melbourne, Victoria, Australia

    Jan Hodgson & Clara Gaff

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

    Jan Hodgson

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

    Clara Gaff

Authors
  1. Jan Hodgson
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  2. Clara Gaff
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Corresponding author

Correspondence to Jan Hodgson.

Appendix 1

Appendix 1

Case Study

Emma, a genetic counselor with 2 years experience post-certification, is seeing a woman with a personal history of breast and ovarian cancer. Earlier in the consultation, Emma told Mrs Taylor that a causative mutation had been found in BRCA1. Mrs Taylor had anticipated this result, but is more distressed than she expected herself to be. While exploring the implications of this result for other family members, Mrs Taylor unexpectedly said she had decided not to tell her daughters, both in their 20s. As one of the reasons Mrs Taylor had wanted testing was to help her daughters, Emma was surprised.

Option A

Emma commented that Mrs Taylor seemed to have changed her mind about telling her daughters. In response, Mrs Taylor was emphatic that testing wouldn’t be any use to them and they would not want to know. Acknowledging how hard it would be to discuss with them, Emma asked Mrs Taylor if her daughters were expecting to be told the result. Mrs Taylor repeated that she did not intend to tell them and elaborated that she felt that this was best for them. Emma reminded her that she had previously thought they would wish to know and asked how they might feel if they later learned the result had been withheld from them.

Option B

Emma commented that the result must have had a pretty big impact on Mrs Taylor to change her mind about telling her daughters like that. After a period of extended silence, while Mrs Taylor composed herself, she agreed and said she really hadn’t thought it would hit her this hard. She didn’t want to put her daughters through this, especially as one of them was looking forward to getting married soon. After giving Mrs Taylor the opportunity to ‘sit’ with her result and to talk more about her feelings, Emma suggested that Mrs Taylor might find it helpful if they met another time or talked further by phone as she adjusted to the news and its implications.

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Hodgson, J., Gaff, C. Enhancing Family Communication About Genetics: Ethical and Professional Dilemmas. J Genet Counsel 22, 16–21 (2013). https://doi.org/10.1007/s10897-012-9514-x

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