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

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Journal of Genetic Counseling

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.

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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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Authors and Affiliations

  1. Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, MD, USA

    Aunchalee E. L. Palmquist & Laura M. Koehly

  2. Department of Behavioral Science, The University of Texas M. D. Anderson Cancer Center, Houston, TX, USA

    Susan K. Peterson & Ellen R. Gritz

  3. School of Public Health, The Ohio State University, Columbus, OH, USA

    Margarette Shegog

  4. Department of Epidemiology and Behavioral Sciences, School of Public Health, University of Texas, Houston, TX, USA

    Sally W. Vernon

  5. The MacMillan Center, Yale University, P.O. Box 208206, New Haven, CT, 06520-8206, USA

    Aunchalee E. L. Palmquist

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  1. Aunchalee E. L. Palmquist
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  2. Laura M. Koehly
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  3. Susan K. Peterson
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  4. Margarette Shegog
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  5. Sally W. Vernon
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  6. Ellen R. Gritz
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Correspondence to Aunchalee E. L. Palmquist.

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Palmquist, A.E.L., Koehly, L.M., Peterson, S.K. et al. “The Cancer Bond”: Exploring the Formation of Cancer Risk Perception in Families with Lynch Syndrome. J Genet Counsel 19, 473–486 (2010). https://doi.org/10.1007/s10897-010-9299-8

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  • DOI: https://doi.org/10.1007/s10897-010-9299-8

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