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Journal of Genetic Counseling

, Volume 19, Issue 5, pp 473–486 | Cite as

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

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

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 perception Family communication Genetic testing Lynch Syndrome Genetic counseling 

Notes

Acknowledgements

This study was supported by the National Human Genome Research Institute, National Institutes of Health (2R01HG1200-6, PI: ERG). This research was also supported, in part, by the Intramural Research Program of the National Human Genome Research Institute, National Institutes of Health (Z01HG200335-01, PI: LMK). The content is solely the responsibility of the authors and does not necessarily represent the official views of the NHGRI or NIH. This research was conducted as part of the first author’s postdoctoral work in the Social and Behavioral Research Branch at the National Human Genome Research Institute. Dr. Palmquist is currently a postdoctoral associate and lecturer at The MacMillan Center, Yale University, New Haven, CT. We thank Sapna Kapoor and Linda Solomon for their assistance with data collection, Mary Fitzgerald and Heather Kitzman for their assistance in developing the interview guide, and ABT Associates for their assistance in transcribing the interviews. We extend our gratitude to our research participants for their generous contribution to this study. Finally, we would like to thank the anonymous reviewers for their invaluable suggestions regarding the revision of this paper.

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Copyright information

© National Society of Genetic Counselors, Inc. 2010

Authors and Affiliations

  • Aunchalee E. L. Palmquist
    • 1
    • 5
    Email author
  • 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

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