Moral concerns of different types of patients in clinical BRCA1/2 gene mutation testing

被引:24
作者
Goelen, G
Rigo, A
Bonduelle, M
De Grève, J
机构
[1] Free Univ Brussels, Dept Med Oncol, B-1090 Brussels, Belgium
[2] Free Univ Brussels, Dept Canc Prevent, B-1090 Brussels, Belgium
[3] Free Univ Brussels, Dept Philosophy & Moral Sci, B-1090 Brussels, Belgium
[4] Free Univ Brussels, Dept Med Genet, B-1090 Brussels, Belgium
关键词
D O I
10.1200/JCO.1999.17.5.1595
中图分类号
R73 [肿瘤学];
学科分类号
100214 ;
摘要
Purpose: Implementing predictive genetic testing for a severe and common chronic disease such as breast cancer may raise unique ethical problems. Here we report on moral concerns experienced by patients in the setting of genetic counseling based on BRCA 1/2 gene testing. Patients and Methods: Patients were members of breast or breast/ovarian cancer families in a consecutive series of 100 families who received counseling at a familial cancer clinic, The patients' moral concerns were identified using the grounded theory approach in the qualitative analysis of verbal transcripts of 45 counseling sessions. included were sessions with patients who had breast and ovarian cancer, as well as their merle and female relatives, before and after the specific BRCA 1/2 gene mutation was identified in the family, and before and after those who opted for mutation analysis were informed of their carrier status. Results: There is an association of BRCA1/2 gene mutation carrier status and specific topics of moral concern, The moral preoccupations of patients with breast and ovarian cancer (probable carriers) related to their being instrumental in the detection of the specific mutation segregating in the family. The preoccupations of possible carriers concerned their own offspring, Individuals who tested positive (proven carriers) were concerned with issues of confidentiality. Patients who tested negative (proven noncarriers) were concerned with helping siblings and other relatives, Conclusion: Knowledge of the moral concerns of subjects in the study sample may help health care providers be aware of the moral concerns of their own patients, This report may also contribute to the debate on predictive testing for familial adult-onset diseases from the patient's perspective. J Clin Oncol 17:1595-1600. (C) 1999 by American Society of Clinical Oncology.
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页码:1595 / 1600
页数:6
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