"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

Research output: Contribution to journalArticlepeer-review

26 Scopus citations

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 aucasian 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.

Original languageEnglish (US)
Pages (from-to)473-486
Number of pages14
JournalJournal of Genetic Counseling
Volume19
Issue number5
DOIs
StatePublished - Oct 2010

Keywords

  • Family communication
  • Genetic counseling
  • Genetic testing
  • Lynch Syndrome
  • Risk perception

ASJC Scopus subject areas

  • Genetics(clinical)

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