caa a22 4500 445331216 CHVBK 20180317142738.0 cr unu---uuuuu 170323e20110601xx s 000 0 eng 10.1007/s10689-011-9420-7 doi (NATIONALLICENCE)springer-10.1007/s10689-011-9420-7 Genetic counseling for patients and families with hereditary breast and ovarian cancer in a developing Asian country: an observational descriptive study [Elektronische Daten] [Sook-Yee Yoon, Meow-Keong Thong, Nur Taib, Cheng-Har Yip, Soo-Hwang Teo] Genetic counseling (GC) and genetic testing are vital risk management strategies in hereditary breast and ovarian cancer (HBOC) syndromes. Hitherto, cancer genetic testing amongst Asians has been described only in developed and high-income Asian countries. We studied the uptake and acceptance of GC and genetic testing services to Asian BRCA carriers in a middle-income country. A total of 363 patients were tested by full sequencing and large rearrangement analysis of both BRCA1 and BRCA2 genes in the Malaysian Breast Cancer (MyBrCa) Genetic Study. Of these, 49 index patients (13.5%) were found to carry deleterious mutations. GC pre- and post- result disclosures were provided and these groups of patients and their families were studied. GC and genetic testing were accepted by 82% of Malaysian patients at high risk for HBOC syndromes. However, risk assessment was limited by large, geographically dispersed, often polygamous or polyandrous families, and the lack of complete cancer registry. Cultural taboos about cancer diagnoses, social marginalization and lack of regulatory control of genetic discrimination were significant concerns. Only 78% of index patients informed their families of their risks and 11% of relatives came forward when offered free counseling and testing. Even when GC and genetic testing are provided at no cost, there remain significant societal and regulatory barriers to effective cancer genetic services in this underserved Asian population. Families believe there is a need for regulatory protection against genetic discrimination. Further studies are needed in the area of increasing awareness about the potential benefits of GC and genetic testing in Asians. Springer Science+Business Media B.V., 2011 Genetic counseling nationallicence Cancer genetics service nationallicence Asian population nationallicence Hereditary breast and ovarian syndrome nationallicence Genetic discrimination nationallicence Yoon Sook-Yee Cancer Research Initiatives Foundation, 2nd Floor Outpatient Centre, Sime Darby Medical Centre, 1 Jalan SS12/1A, 47500, Subang Jaya, Selangor, Malaysia aut Thong Meow-Keong Genetics Unit, Department of Paediatrics, Faculty of Medicine, University of Malaya, 50603, Kuala Lumpur, Malaysia aut Taib Nur Department of Surgery, Faculty of Medicine, University of Malaya, 50603, Kuala Lumpur, Malaysia aut Yip Cheng-Har Department of Surgery, Faculty of Medicine, University of Malaya, 50603, Kuala Lumpur, Malaysia aut Teo Soo-Hwang Cancer Research Initiatives Foundation, 2nd Floor Outpatient Centre, Sime Darby Medical Centre, 1 Jalan SS12/1A, 47500, Subang Jaya, Selangor, Malaysia aut Familial Cancer Springer Netherlands 10/2(2011-06-01), 199-205 1389-9600 10:2<199 2011 10 10689 https://doi.org/10.1007/s10689-011-9420-7 text/html Onlinezugriff via DOI 1 research-article jats NATIONALLICENCE 856 40 https://doi.org/10.1007/s10689-011-9420-7 text/html Onlinezugriff via DOI NATIONALLICENCE 700 1- Yoon Sook-Yee Cancer Research Initiatives Foundation, 2nd Floor Outpatient Centre, Sime Darby Medical Centre, 1 Jalan SS12/1A, 47500, Subang Jaya, Selangor, Malaysia aut NATIONALLICENCE 700 1- Thong Meow-Keong Genetics Unit, Department of Paediatrics, Faculty of Medicine, University of Malaya, 50603, Kuala Lumpur, Malaysia aut NATIONALLICENCE 700 1- Taib Nur Department of Surgery, Faculty of Medicine, University of Malaya, 50603, Kuala Lumpur, Malaysia aut NATIONALLICENCE 700 1- Yip Cheng-Har Department of Surgery, Faculty of Medicine, University of Malaya, 50603, Kuala Lumpur, Malaysia aut NATIONALLICENCE 700 1- Teo Soo-Hwang Cancer Research Initiatives Foundation, 2nd Floor Outpatient Centre, Sime Darby Medical Centre, 1 Jalan SS12/1A, 47500, Subang Jaya, Selangor, Malaysia aut NATIONALLICENCE 773 0- Familial Cancer Springer Netherlands 10/2(2011-06-01), 199-205 1389-9600 10:2<199 2011 10 10689 Metadata rights reserved Springer special CC-BY-NC licence nationallicence BK010053 XK010053 XK010000 NATIONALLICENCE NATIONALLICENCE NL-springer