Department of Informatics, Bioengineering, Robotics and Systems Engineering, University of Genoa, Genoa, Italy.
Department of Internal Medicine and Medical Specialties, University of Genoa, Genoa, Italy.
Eur J Cancer Care (Engl). 2019 Sep;28(5):e13083. doi: 10.1111/ecc.13083. Epub 2019 May 5.
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.
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.
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."
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.
在癌症基因检测面板时代，需要新的遗传咨询模式来提供有效的决策支持。由于对南欧患者和家庭在这方面的需求和经验知之甚少，我们探讨了意大利女性在临床 BRCA1/2 咨询和检测方面的经历。
我们采访了 19 名有强烈家族史但无个人癌症史的意大利女性，她们接受了临床 BRCA1/2 检测。采访进行了录音和转录，并将定性数据组织成主题。
大多数受访者在接受预测试咨询之前就决定进行检测。尽管有一半的样本报告说，他们在没有考虑其影响的情况下做出了决定，但大多数参与者都明确表示他们的选择“绝对正确”。
意大利的一部分女性在接受首次癌症遗传咨询之前，可能已经对检测做出了坚定的决定。为了增强女性的决策能力，新的癌症遗传咨询模式可以考虑到她们在检测过程中的不同方法。这包括从不同的文化视角理解决策。例如，在像意大利这样的家族主义国家，决策支持可能涉及到对家庭成员的责任以及对家庭的优先考虑的广泛的共同假设。
