Dilemmas encountered when talking about BRCA1/2 testing

Foster, C., Eeles, R., Arden-Jones, A., Moynihan, C. and Watson, M. (2005) Dilemmas encountered when talking about BRCA1/2 testing. The 9th International Meeting on the Psychosocial Aspects of Genetic Testing for Hereditary Cancer, Philadelphia, USA. 08 - 09 Jun 2005.

Abstract

Background: In the UK health professionals do not inform their patients' kin about BRCA1/2 test results or genetic testing without their written consent. Thus, the onus is generally on women attending genetic counselling to talk to relatives about the family history and their potential increased risk. This communication process within the family around the time of predictive genetic testing is largely unexplored and provides the focus of this prospective qualitative study. Method: 15 healthy women attending a genetics clinic for predictive testing were interviewed prior to receiving their BRCA1/2 test result and again 6 months later. The average age of the women was 46 years (range 33-62 years). 5 of the 15 women were identified as carrying a BRCA1/2 mutation. A grounded theory approach was used. Findings: Findings illustrate the dilemmas women faced in juggling social roles and expectations, which had an impact on communication within the family in the context of predictive genetic testing. Tensions between responsibilities towards themselves and others and their fulfilment of social roles had an impact on who women informed and how they did so. Implications: Communication difficulties should be considered when assigning patients the role of information provider.

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