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
相关论文
共 50 条
  • [21] Opinion about reproductive decision making among individuals undergoing BRCA1/2 genetic testing in a multicentre Spanish cohort
    Fortuny, Daniel
    Balmana, Judith
    Grana, Begona
    Torres, Asuncion
    Ramon y Cajal, Teresa
    Darder, Esther
    Gadea, Neus
    Velasco, Angela
    Lopez, Consol
    Sanz, Judit
    Alonso, Carmen
    Brunet, Joan
    HUMAN REPRODUCTION, 2009, 24 (04) : 1000 - 1006
  • [22] Women's decision-making experience after BRCA genetic testing.
    Perry, C
    ONCOLOGY NURSING FORUM, 2004, 31 (02) : 450 - 451
  • [23] Development and testing of a decision aid for breast cancer prevention for women with a BRCA1 or BRCA2 mutation
    Metcalfe, K. A.
    Poll, A.
    O'Connor, A.
    Gershman, S.
    Armel, S.
    Finch, A.
    Demsky, R.
    Rosen, B.
    Narod, S. A.
    CLINICAL GENETICS, 2007, 72 (03) : 208 - 217
  • [24] PERCEPTIONS AND EXPERIENCES OF WOMEN TESTING POSITIVE FOR BRCA1/2 GENETIC MUTATIONS: A QUALITATIVE ANALYSIS
    Dibble, Kate E.
    Donorfio, Laura K.
    Britner, Preston A.
    Kessler, Trane
    Atehortua, Valentina
    Anderson, Annika R.
    Chan, Jason
    Bellizzi, Keith M.
    ANNALS OF BEHAVIORAL MEDICINE, 2020, 54 : S273 - S273
  • [25] Uptake of free BRCA1/2 testing in women at risk for BRCA1/2 germline mutations.
    Shannon, KM
    Lubratovich, ML
    Finkelstein, D
    Goggins, W
    Haber, DA
    Seiden, MV
    AMERICAN JOURNAL OF HUMAN GENETICS, 1999, 65 (04) : A322 - A322
  • [26] Treatment decision making and psychosocial outcomes associated with rapid genetic testing for BRCA1 and BRCA2 in women newly diagnosed with breast cancer
    Metcalfe, Kelly A.
    Narod, Steven
    Eisen, Andrea
    Lerner-Ellis, Jordan
    JOURNAL OF CLINICAL ONCOLOGY, 2016, 34 (15)
  • [27] Decision types regarding prophylactic oophorectomy among women seeking Brca1/2 testing
    Hurley, K.
    Rubin, L.
    Jhanwar, S.
    Wedderburn, W.
    Balistreri, L.
    PSYCHO-ONCOLOGY, 2006, 15 (02) : S66 - S66
  • [28] What Black Women Know and Want to Know About Counseling and Testing for BRCA1/2
    Inez Adams
    Juleen Christopher
    Karen Patricia Williams
    Vanessa B. Sheppard
    Journal of Cancer Education, 2015, 30 : 344 - 352
  • [29] Impact of BRCA1 testing on women with cancer:: A pilot study
    Wood, ME
    Mullineaux, L
    Rahm, AK
    Fairclough, D
    Wenzel, L
    GENETIC TESTING, 2000, 4 (03): : 265 - 272
  • [30] What Black Women Know and Want to Know About Counseling and Testing for BRCA1/2
    Adams, Inez
    Christopher, Juleen
    Williams, Karen Patricia
    Sheppard, Vanessa B.
    JOURNAL OF CANCER EDUCATION, 2015, 30 (02) : 344 - 352