Journal of Genetic Counseling

, Volume 27, Issue 3, pp 533–548 | Cite as

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

  • Allison Werner-Lin
  • Shana L. Merrill
  • Amanda C. Brandt
Professional Issues


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.


Hereditary breast and ovarian cancer syndrome Lynch syndrome Cancer genetic counseling Health communication Children Family communication 



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.

Compliance with Ethical Standards

Conflict of Interest

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


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Copyright information

© National Society of Genetic Counselors, Inc. 2018

Authors and Affiliations

  1. 1.School of Social Policy and PracticeUniversity of PennsylvaniaPhiladelphiaUSA
  2. 2.Hospital of the University of PennsylvaniaPhiladelphiaUSA
  3. 3.Smilow Cancer Genetics and PreventionYale New Haven HealthNew HavenUSA

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