Patients' attitudes regarding genetic counseling before germline BRCA1/2 pathogenic variants testing in Taiwan: A single‐country, multi‐center, patient‐reported outcome study
- 5 March 2023
- journal article
- research article
- Published by Wiley in Journal of Genetic Counseling
- Vol. 32 (4), 788-797
- https://doi.org/10.1002/jgc4.1688
Abstract
Germline pathogenic variants of BRCA1 or BRCA2 cause hereditary breast and ovarian cancer syndromes. The present study investigated the participants' understanding and awareness of germline BRCA1/2 pathogenic variants before genetic counseling, the expectations and obstacles for genetic testing from the perspective of participants and their families, and their attitudes towards genetic testing after counseling. In this single-country, multicenter, non-interventional, patient-reported outcome study, untested cancer patients and their families who visited genetic counseling clinics or who wanted to receive pre-test genetic counseling were eligible to fill in the questionnaire after pre-test counseling for germline BRCA1/2 testing. Demographic information, clinical characteristics, and information collected from the questionnaires, including the understanding of BRCA1/2 pathogenic variants before genetic counseling, understanding of BRCA1/2 pathogenic variants and feelings after genetic counseling, willingness to share results of genetic testing with family, and willingness to receive genetic testing, were summarized using descriptive statistics. A total of 88 participants were enrolled. The proportion of slight understanding of BRCA1/2 pathogenic variants increased from 11.4% to 67.0%, and the proportion of full understanding increased from 0% to 8.0%. After genetic counseling, most participants were willing to undergo genetic testing (87.5%) and share the results with their families (96.6%). The main factors that may affect participants' willingness to undergo BRCA1/2 testing were management (61.2%) and testing costs (25.9%). After pre-test counseling, there was a high acceptance of BRCA1/2 testing and in-family information sharing in Taiwanese patients with cancer and their families, which may serve as a reference for implementing genetic counseling in Taiwan.This publication has 32 references indexed in Scilit:
- Cancers associated with BRCA1 and BRCA2 mutations other than breast and ovarianCancer, 2014
- Genetic predisposition to pancreatic cancerWorld Journal of Gastroenterology, 2014
- BRCA1 and BRCA2 Mutations in the Ovarian Cancer Population across Race and Ethnicity: Special Reference to AsiaOncology, 2013
- Risk of cancer other than breast or ovarian in individuals with BRCA1 and BRCA2 mutationsFamilial Cancer, 2011
- The molecular pathogenesis of hereditary ovarian carcinomaCancer, 2010
- Development and validation of a simple questionnaire for the identification of hereditary breast cancer in primary careBMC Cancer, 2009
- Results of a randomized study of telephone versus in-person breast cancer risk counselingPatient Education and Counseling, 2006
- A New Definition of Genetic Counseling: National Society of Genetic Counselors’ Task Force ReportJournal of Genetic Counseling, 2006
- Cancer Risks for Male Carriers of Germline Mutations in BRCA1 or BRCA2: A Review of the LiteratureJournal of Clinical Oncology, 2004
- Fallopian Tube and Primary Peritoneal Carcinomas Associated With BRCA MutationsJournal of Clinical Oncology, 2003