To tell or not to tell: barriers and facilitators in family communication about genetic risk

K Forrest-Keenan, S A Simpson, B J Wilson, E R van Teijlingen, L McKee, N Haites, E Matthews

Research output: Contribution to journalArticle

265 Citations (Scopus)

Abstract

Communication about genetic risk in families is an important issue for genetic counsellors. The objective of this study was to explore the barriers and facilitators in family communication about genetic risk. Semi-structured interviews were undertaken with patients in the Northeast of Scotland who had attended genetic counselling for risk of hereditary breast and ovarian cancer and Huntington's disease, and with some spouses/partners. The interviews confirmed that the issue of disclosure was a problem for some, and that there were generic communication issues common to both groups. Telling family members about genetic risk was generally seen as a family responsibility and family structures, dynamics and 'rules' influenced disclosure decisions. A sense of responsibility towards younger generations was also important. The level of certainty felt by a person in relation to his or her own risk estimate also influenced what he or she could tell other family members. Communication within a family about genetic risk is a complex issue and is influenced by both pre-existing familial and cultural factors and individuals' responses to risk information. If genetic counsellors understood how these factors operate in individual families they might be able to identify effective strategies to promote considered decisions and prevent unnecessary emotional distress.
Original languageEnglish
Pages (from-to)317-326
Number of pages10
JournalClinical Genetics
Volume64
Issue number4
Early online date15 Sep 2003
DOIs
Publication statusPublished - 1 Oct 2003

Keywords

  • adult
  • communication
  • decision making
  • family
  • family health
  • female
  • genetic counseling
  • genetic predisposition to disease
  • genetic testing
  • humans
  • male
  • questionnaires
  • Scotland
  • truth disclosure
  • uncertainty
  • family communication
  • genetic counselling
  • hereditary breast and ovarian cancer
  • Huntington's disease
  • presymptomatic predictive testing
  • qualitative methods

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