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Genetic counseling for patients and families with hereditary breast and ovarian cancer in a developing Asian country: an observational descriptive study

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Abstract

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.

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Acknowledgments

The study was approved by the University Malaya Medical Centre Ethics Committee and all participants gave informed consent before taking part in the research. This study was funded by the Ministry of Science, Technology and Innovation, University Malaya and Cancer Research Initiatives Foundation. The study funders did not have any role in the study design; collection, analysis and interpretation of data; in the writing of the report; and in the decision to submit the article for publication.

Conflict of interest

All authors declare that the answer to the questions on your competing interest form are all “No” and therefore have nothing to declare.

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Authors and Affiliations

  1. Cancer Research Initiatives Foundation, 2nd Floor Outpatient Centre, Sime Darby Medical Centre, 1 Jalan SS12/1A, 47500, Subang Jaya, Selangor, Malaysia

    Sook-Yee Yoon & Soo-Hwang Teo

  2. Genetics Unit, Department of Paediatrics, Faculty of Medicine, University of Malaya, 50603, Kuala Lumpur, Malaysia

    Meow-Keong Thong

  3. Department of Surgery, Faculty of Medicine, University of Malaya, 50603, Kuala Lumpur, Malaysia

    Nur Aishah Mohd Taib, Cheng-Har Yip & Soo-Hwang Teo

Authors
  1. Sook-Yee Yoon
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  2. Meow-Keong Thong
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  3. Nur Aishah Mohd Taib
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  4. Cheng-Har Yip
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  5. Soo-Hwang Teo
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Correspondence to Meow-Keong Thong.

Additional information

Sook-Yee Yoon and Meow-Keong Thong contributed equally.

Researchers are independent from the funders.

All authors had full access to all of the data in the study and can take responsibility for the integrity of the data and the accuracy of the data analysis.

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Yoon, SY., Thong, MK., Taib, N.A.M. et al. Genetic counseling for patients and families with hereditary breast and ovarian cancer in a developing Asian country: an observational descriptive study. Familial Cancer 10, 199–205 (2011). https://doi.org/10.1007/s10689-011-9420-7

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  • DOI: https://doi.org/10.1007/s10689-011-9420-7

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