Acceptance, motivators, and barriers in attending breast cancer genetic counseling in Asians

Chin, Tan-Min; Tan, S. G.; Lim, Siak Piang; Iau, Philip; Yong, Wei‐Peng; Wong, Seng-Weng; Lee, Soo‐Chin

doi:10.1016/j.cdp.2005.06.009

Cited by 38 publications

(40 citation statements)

References 16 publications

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“…Important motivators were learning about cancer risk and cancer detection, helping the family, and the doctor's recommendation. Important barriers were the misperception that cancer patients could not gain personally, cost issues, fears of bad news, and concerns of inability to make use of the information (Table 2) [21]. …”

Section: Resultsmentioning

confidence: 99%

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Establishing a Cancer Genetics Programme in Asia - the Singapore Experience

Chieng

Lee

2006

Hered Cancer Clin Pract

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Cancer genetics is now an established oncology subspecialty with the primary prevention role of identifying high-risk individuals through genetic information for enrolment into screening and preventive programmes. Integrated into major Western centres since the late 1990s, such a programme has been established in Singapore since 2001. Our programme has evaluated 367 index patients comprising mainly breast and colorectal cancer cases. Cancer patients were receptive to genetic counselling, but cost posed a major barrier to genetic testing. However, when the cost barrier was removed through government subsidy plans, more than half of high-risk patients still declined testing. The major barriers were reluctance to involve family members, perception that the information would not change management, and fears of negative feelings. Confirmed mutation carriers were compliant to screening and receptive to prophylactic surgery. Uptake of predictive testing among cancer-free family members has been low, possibly arising from the stigma associated with cancer in our Asian culture. These potential barriers are being addressed through government subsidy plans, continuing education to increase awareness, and being culturally sensitive when dealing with the Asian family.

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Section: Resultsmentioning

confidence: 99%

“…Cost has been cited as an important barrier to genetic counselling and testing in many prior studies, including our own [21,24,25]. While genetic counselling is available to Singaporeans at a subsidized and affordable rate, genetic testing is not.…”

Section: Discussionmentioning

confidence: 99%

Establishing a Cancer Genetics Programme in Asia - the Singapore Experience

Chieng

Lee

2006

Hered Cancer Clin Pract

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“…We found that significantly fewer immigrants were seen for cancer genetic counseling than would be expected from data on the general population. Next to possible confounding factors like lower socioeconomic status (Culver et al 2001;Chin et al 2005), low level of acculturation (Heck et al 2008) and traditional beliefs (Barlow-Stewart et al 2006), the low number of immigrants can partly be explained by the lower incidence of cancer and cancer mortality rates in different countries of origin (Turkey, Morocco, Surinam, Netherlands Antilles and Aruba) when compared to the Netherlands (Arnold et al 2011;Stirbu et al 2006;Visser et al 2004). However, since specific approaches to immigrant populations improve their access to genetic counseling, as shown for the enrolment of African-American families in a genetic research project in the USA (Spruill 2010), we still recommend future studies to look carefully at the reasons why immigrants are not referred for counseling.…”

Section: Discussionmentioning

confidence: 99%

Who is being referred to cancer genetic counseling? Characteristics of counselees and their referral

2012

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Both physician and patient play a role in the referral process for cancer genetic counseling. Access to such counseling is not optimal because some eligible patients are not being reached by current referral practice. We aimed to identify factors associated with the initiator of referral. During a 7-month period, we recorded demographic characteristics like gender, personal and family history of cancer, ethnicity and eligibility for genetic testing for 406 consecutive counselees using a specially designed questionnaire. Counselees were seen in a university hospital or a community hospital (n 07) in the Netherlands. We also recorded educational level of each counselee, clinical setting and who initiated referral. Descriptive statistics were used to describe the counselees' general characteristics. We analysed the association between counselee characteristics and the initiator of referral by logistic regression. The majority of counselees seemed to have initiated referral themselves but were indeed eligible for genetic testing. In comparison to the general population in the Netherlands, the counselees had a higher level of education, and there were fewer immigrants, although a higher level of education was not found to be a facilitating factor for referral. The clinical setting where a counselee was seen was associated with initiator of referral, although this relationship was not straightforward. There is a complex interaction between clinical setting and initiator of referral, which warrants further research to elucidate the factors involved in this relationship. Patients seen in cancer genetic counseling do not reflect the general population in terms of educational level or ethnicity.

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“…To date, cancer genetic testing amongst Asians has been described only in developed and high-income Asian countries [5,11]. There have been few reports on the acceptance of genetic counseling in other Asian settings, particularly in low-and middle-income countries [12], in part because in these settings, genetic testing has hitherto been conducted in research settings, where the results of the genetic test are often undisclosed to research [13][14][15][16][17][18].…”

Section: Introductionmentioning

confidence: 99%

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

et al. 2011

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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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Acceptance, motivators, and barriers in attending breast cancer genetic counseling in Asians

Cited by 38 publications

References 16 publications

Establishing a Cancer Genetics Programme in Asia - the Singapore Experience

Establishing a Cancer Genetics Programme in Asia - the Singapore Experience

Who is being referred to cancer genetic counseling? Characteristics of counselees and their referral

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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