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

被引:11
|
作者
Battistuzzi, Linda [1 ,2 ]
Franiuk, Marzena [3 ]
Kasparian, Nadine [4 ,5 ,6 ]
Rania, Nadia [7 ]
Migliorini, Laura [7 ]
Varesco, Liliana [3 ]
机构
[1] Univ Genoa, Dept Informat Bioengn Robot & Syst Engn, Via Opera Pia 13, I-16145 Genoa, Italy
[2] Univ Genoa, Dept Internal Med & Med Specialties, Genoa, Italy
[3] San Martino Polyclin Hosp, Unit Hereditary Canc, Genoa, Italy
[4] Harvard Univ, Harvard Med Sch, Boston, MA 02115 USA
[5] Boston Childrens Hosp, Dept Cardiol, Boston, MA USA
[6] UNSW Sydney, UNSW Med, Sch Womens & Childrens Hlth, Discipline Paediat, Sydney, NSW, Australia
[7] Univ Genoa, Dept Educ Sci, Genoa, Italy
关键词
BRCA1; 2; culture; decision-making; ethics; genetic counseling; qualitative research; BREAST-CANCER; FAMILY; COMMUNICATION; INFORMATION; MUTATION; RESPONSIBILITY; FAMILIALISM; EXPERIENCES; VARIETIES; ATTITUDES;
D O I
10.1111/ecc.13083
中图分类号
R73 [肿瘤学];
学科分类号
100214 ;
摘要
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.
引用
收藏
页数:9
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