Family communication about genetic risk: the little that is known

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

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117 Citations (Scopus)

Abstract

Although family communication is important in clinical genetics only a small number of studies have specifically explored the passing on of genetic knowledge to family members. In addition, many of these present exploratory or tentative findings based upon small sample sizes, or data collected only a short time after testing. Nevertheless, if health professionals are to develop effective strategies to help patients' deal with communication issues, we need to know more about what actually happens in families. The aim of this commentary is to identify factors which appear to influence whether patients share information about genetic risk with relatives who are unaware of that risk, with whom they share it and how they go about it. The paper draws upon evidence and thinking from the disciplines of psychology (including family therapy), sociology, medicine and genetic counselling. It is presented under the following headings: disease factors, individual factors, family factors and sociocultural factors. It concludes by highlighting a number of key issues which are relevant for health professionals. Copyright © 2004 S. Karger AG, Basel.

Original languageEnglish
Pages (from-to)15-24
Number of pages10
JournalCommunity Genetics
Volume7
Issue number1
DOIs
Publication statusPublished - 1 Jan 2004

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Keywords

  • family communication
  • genetic risk
  • genetic testing
  • genetic counselling
  • Huntington's-Disease
  • cystic-fibrosis
  • ovarian-cancer
  • breast-cancer
  • prenatal-diagnosis
  • ethical-issues
  • disclosure
  • attitudes
  • information
  • experience

Cite this

Wilson, B. J., Forrest, K., van Teijlingen, E. R., McKee, L., Haites, N., Matthews, E., & Simpson, S. A. (2004). Family communication about genetic risk: the little that is known. Community Genetics, 7(1), 15-24. https://doi.org/10.1159/000080300