A qualitative study on decision-making about BRCA1/2 testing in Italian women

Eur J Cancer Care (Engl). 2019 Sep;28(5):e13083. doi: 10.1111/ecc.13083. Epub 2019 May 5.

Abstract

Objective: In the era of cancer panel testing, new models of genetic counselling providing effective decision-making support are needed. As little is known about Southern European patients' and families' needs and experiences in this regard, we explored Italian women's experiences of clinical BRCA1/2 counselling and testing.

Methods: We interviewed 19 Italian women with a strong family history but no personal history of cancer who had had clinical BRCA1/2 testing. Interviews were recorded and transcribed, and qualitative data were organised into themes.

Results: Most respondents had decided to pursue testing before pre-test counselling. Although half the sample reported having reached the decision without thinking through its implications, most participants qualified their choice as unequivocally "the right one."

Conclusion: A subset of Italian women may arrive at their first cancer genetic consultation having already made a firm decision about testing. To empower women's decision-making, new models of cancer genetic counselling could usefully take into account differences in how they approach the testing process. This includes understanding decision-making from different cultural perspectives. In familistic countries like Italy, for example, decisional support may involve exploring widely shared assumptions regarding responsibilities towards family members and the prioritisation of family over self.

Keywords: BRCA1/2; culture; decision-making; ethics; genetic counseling; qualitative research.

MeSH terms

  • Adult
  • Attitude to Health
  • Decision Making*
  • Female
  • Genes, BRCA1*
  • Genes, BRCA2*
  • Genetic Counseling*
  • Genetic Testing*
  • Hereditary Breast and Ovarian Cancer Syndrome / genetics*
  • Humans
  • Italy
  • Qualitative Research
  • Young Adult