Journal of Genetic Counseling

, Volume 19, Issue 5, pp 473–486

“The Cancer Bond”: Exploring the Formation of Cancer Risk Perception in Families with Lynch Syndrome

  • Aunchalee E. L. Palmquist
  • Laura M. Koehly
  • Susan K. Peterson
  • Margarette Shegog
  • Sally W. Vernon
  • Ellen R. Gritz
Original Research

DOI: 10.1007/s10897-010-9299-8

Cite this article as:
Palmquist, A.E.L., Koehly, L.M., Peterson, S.K. et al. J Genet Counsel (2010) 19: 473. doi:10.1007/s10897-010-9299-8

Abstract

This study explores the social context of hereditary cancer risk perception in three families, an African-American family, a Mexican-American family, and a Caucasian family, each with Lynch Syndrome documented by a mismatch repair gene mutation. Communication network assessments measured family communication about cancer experiences and genetic testing information among a total of 26 participants. Participant narratives were evaluated to gain insight into how family cancer experiences and genetic testing information have shaped perceptions of cancer risk. Analysis of communication networks indicated that some families discussed cancer experiences to a greater extent than genetic testing information, and vice-versa. Interviews elucidated that sharing both types of health information led participants to conceptualize linkages among a strong family history of cancer, genetic testing information, and cancer prevention strategies. Understanding how different types of family communication influence the formation of perceived hereditary disease risk may enhance efforts to tailor genetic counseling services for families.

Keywords

Risk perceptionFamily communicationGenetic testingLynch SyndromeGenetic counseling

Copyright information

© National Society of Genetic Counselors, Inc. 2010

Authors and Affiliations

  • Aunchalee E. L. Palmquist
    • 1
    • 5
  • Laura M. Koehly
    • 1
  • Susan K. Peterson
    • 2
  • Margarette Shegog
    • 3
  • Sally W. Vernon
    • 4
  • Ellen R. Gritz
    • 2
  1. 1.Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of HealthBethesdaUSA
  2. 2.Department of Behavioral ScienceThe University of Texas M. D. Anderson Cancer CenterHoustonUSA
  3. 3.School of Public HealthThe Ohio State UniversityColumbusUSA
  4. 4.Department of Epidemiology and Behavioral Sciences, School of Public HealthUniversity of TexasHoustonUSA
  5. 5.The MacMillan CenterYale UniversityNew HavenUSA