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Talking with Children About Adult-Onset Hereditary Cancer Risk: A Developmental Approach for Parents

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Journal of Genetic Counseling

A Correction to this article was published on 23 July 2018

This article has been updated

Abstract

Families often express difficulty to their providers and request guidance regarding the task of communicating with children about potential adult-onset inherited cancer risks. This disclosure is often complicated by the parent’s ongoing adjustment to their mutation status, guilt at potential transmission of the mutation to the child, concern over inciting distress in children, and the varied capacities of children in the home to understand genetic information. Providers often do not have adequate resources to support or facilitate disclosure of genetic test results to children. Optimally, communication about inherited cancer risk is an open, ongoing process within the family. We recommend that parents tailor conversations to the child’s developmental, cognitive, emotional, and behavioral abilities to support comprehension. Based on well-established theories of child development, empirical research on family communication of hereditary cancer risk, and clinical counseling experience, we offer recommendations for parental disclosure of genetic risk to children, case examples with critical discussion of relevant topics, common child questions with sample scripted responses, and additional printed and online resources.

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Change history

  • 23 July 2018

    The original article [1] was initially published with the following list of authors: Allison Werner-Lin, Shana L. Merrill, and Amanda C. Brandt. This author list is now corrected as follows: Allison Werner-Lin, Shana L. Merrill, Amanda C. Brandt, Rachel E. Barnett, & Ellen T. Matloff.

Notes

  1. Parents and/or children who seek out information online about rates of cancer in children will find it is the leading or second leading cause of death in children in the USA. Yet pediatric cancer is also exceedingly rare (SEER 2016).

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Acknowledgements

The authors acknowledge Ellen Matloff for inspiring the need for this work. The authors also acknowledge Victoria Groner for preparing the diagrams, examining resource materials, and supporting the literature review.

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Authors and Affiliations

  1. School of Social Policy and Practice, University of Pennsylvania, 3701 Locust Walk, Philadelphia, PA, 19104, USA

    Allison Werner-Lin

  2. Hospital of the University of Pennsylvania, 3400 Spruce Street, Philadelphia, PA, 19104, USA

    Shana L. Merrill

  3. Smilow Cancer Genetics and Prevention, Yale New Haven Health, 330 Orchard Street, Suite 107 & 109, New Haven, CT, 06511, USA

    Amanda C. Brandt

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  1. Allison Werner-Lin
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  2. Shana L. Merrill
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Correspondence to Allison Werner-Lin.

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Allison Werner-Lin, Shana L. Merrill, and Amanda C. Brandt declare that they have no conflict of interest.

Appendix

Appendix

Table 6. Resources for Pre-School Aged Children
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Table 7. Resources for Elementary School Aged Children
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Table 9. Resources for High School Aged Children
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Werner-Lin, A., Merrill, S.L. & Brandt, A.C. Talking with Children About Adult-Onset Hereditary Cancer Risk: A Developmental Approach for Parents. J Genet Counsel 27, 533–548 (2018). https://doi.org/10.1007/s10897-017-0191-7

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