Saudi Women's Interest in Breast Cancer Gene Testing: Possible Influence of Awareness, Perceived Risk and Socio-demographic Factors

  • Amin, Tarek Tawfik ;
  • Al-Wadaani, Hamed Abdullah ;
  • Al-Quaimi, Manal Mubarak ;
  • Aldairi, Nedaa' Abdullah ;
  • Alkhateeb, Jawaher Mohammed ;
  • Al-Jaafari, Azzam Abdul Lateef
  • Published : 2012.08.31


Background: Development of effective educational strategies should accompany increases in public awareness and the availability of genetic testing for breast cancer (BC). These educational strategies should be designed to fulfill the knowledge gap while considering factors that influence women's interest in order to facilitate decision making. Objective: To determine the possible correlates of Saudi women's interest in BC genes testing including socio-demographics, the level of awareness towards BC genes, the family history of BC and the perceived personal risk among adult Saudi women in Al Hassa, Saudi Arabia. Subjects and methods: This cross-sectional study was carried out during the second BC community-based campaign in Al Hassa, Saudi Arabia. All Saudi women aged ${\geq}18$ years (n=781) attending the educational components of the campaign were invited to a personal interview. Data collection included gathering information about sociodemographics, family history of BC, the perceived personal risk for BC, awareness and attitude towards BC genes and the women's interest in BC genes testing. Results: Of the included women (n=599), 19.5% perceived higher risk for BC development, significantly more among < 40 years of age, and with positive family history of BC before 50 years of age. The participants demonstrated a poor level of awareness regarding the inheritance, risk, and availability of BC genetic testing. The median summated knowledge score was 1.0 (out of 7 points) with a knowledge deficit of 87.8%. The level of knowledge showed significant decline with age (> 40 years). Of the included women 54.7% expressed an interest in BC genetic testing for assessing their BC risk. Multivariate regression model showed that being middle aged (Odds Ratio 'OR'=1.88, confidence intervals 'C.I'=1.14-3.11), with higher knowledge level (OR=1.67, C.I=1.08-2.57) and perceiving higher risk for BC (OR=2.11, C.I=1.61-2.76) were the significant positive correlates for Saudi women interest in BC genetic testing. Conclusion: Saudi women express high interest in genetic testing for BC risk despite their poor awareness. This great interest may reflect the presence of inappropriate information regarding BC genetic testing and its role in risk analysis.


Breast cancer;genetic testing;awareness;perceived risk;interest;Saudi women


  1. Akhtar SS, Nadrah HS (2005). Assessment of the quality of breast cancer care: A single institutional study from Saudi Arabia. Int J Qual Health Care, 17, 301-5.
  2. Amin TT, Al-Mulhim AR, Chopra R (2009). Histopathological patterns and risk of female breast lesions at secondary level care in Saudi Arabia. Asian Pac J Cancer Prev, 10, 1121-6.
  3. Andrykowski MA, Munn RK, Studts JL (1996). Interest in learning of personal genetic risk for cancer: a general population survey. Prev Med, 25, 527-536.
  4. Armstrong K, Calzone K, Stopfer J et al (2000). Factors associated with decisions about clinical BRCA1/2 testing. Cancer Epidemiol Biomarkers Prev, 9, 1251-1254.
  5. Armstrong K, Weber B, Ubel PA, et al(2002). Interest in BRCA1/2 testing in a primary care population. Prev Med, 34, 590-5.
  6. Arnadóttir G, Sigurðardóttir V, Jónsson FH, et al(2000). Interest in breast cancer genetic testing among Icelandic women. Laeknabladid, 86, 771-777.
  7. Benjamin-Garner R, Oakes JM, Meischke H, et al (2002). Sociodemographic differences in exposure to health information. Ethn Dis, 12, 124-134.
  8. Bluman LG, Rimer BK, Berry DA et al (1997). Attitudes, knowledge, and risk perceptions of women with breast and/or ovarian cancer considering testing for BRCA1 and BRCA2. J Clin Oncol, 17,1040-1046.
  9. Bottorff JL, Ratner PA, Balneaves LG, et al (2002). Women's interest in genetic testing for breast cancer risk: the influence of socio-demographics and knowledge. Cancer Epidemiol Biomarkers Prev, 11, 89-95.
  10. Bottorff, JL, Johnson JL, Ratner PA, et al(1997). The provision of personal breast cancer risk information: service or disservice? Poster presented at the National Workshop on Organized Breast Cancer Screening Programs, Ottawa, Ontario.
  11. Bottorff JL, Balneaves LG, Buxton J, et al (2000). Falling through the cracks—women's experiences of ineligibility for genetic testing for risk of breast cancer. Can. Family Physician, 46, 1449-1456.
  12. Brain K, Gray J, Norman P, et al (2000). Why do women attend familial breast cancer clinics? J Med Genet, 37, 197-202.
  13. Bruno M, Tommasi1 S, Stea1 B, et al (2004). Awareness of breast cancer genetics and interest in predictive genetic testing: a survey of a southern Italian population. Annals of Oncology, 15 (Supplement 1), i48-i54.
  14. Cappelli M, Surh L, Humphreys L, Verma S, Logan D et al (1999). Psychological and social determinants of women's decisions to undergo genetic counseling and testing for breast cancer. Clin Genet, 55, 419-430.
  15. Chaliki H, Loader S, Levenkron JC et al (1995). Women's receptivity to testing for a genetic susceptibility to breast cancer. Am J Public Health, 85, 1133-1135.
  16. Donovan, KA, Tucker DC (2000). Knowledge about genetic risk for breast cancer and perceptions of genetic testing in a socio-demographically diverse sample. J Behav Med, 23, 15-36.
  17. Durfy SJ, Bowen DJ, McTiernan A et al (1999). Attitudes and interest in genetic testing for breast and ovarian cancer susceptibility in diverse groups of women in western Washington. Cancer Epidemiol Biomarkers Prev, 8, 369- 375.
  18. El-Harith HA, Abdel-Hadi MS, Steinmann D, et al (2002). BRCA1 and BRCA2 mutations in breast cancer patients from Saudi Arabia. Saudi Med J, 23, 700-4.
  19. El Saghir N, Khalid M, El Kinge A, el al (2006). Washington DC, USA: UICC World Cancer Congress. Patterns of Breast Cancer Care in Arab Countries; pp. 8-12.
  20. Frank TS, Deffenbaugh AM, Reid JE, et al (2002). Clinical characteristics of individuals with germline mutations in BRCA1 and BRCA2: analysis of 10,000 individuals. J Clin Oncol, 20, 1480- 1490.
  21. Gronwald J, Tung N, Foulkes WD, et al (2006). Tamoxifen and contralateral breast cancer in BRCA1 and BRCA2 carriers: an update. Int J Cancer, 118, 2281-2284.
  22. Halbert CH, Kessler LJ, Mitchell E (2005). Genetic testing for inherited breast cancer risk in African Americans. Cancer Invest, 23, 285-295.
  23. Halbert CH (2006). Genetic counseling and testing for breast cancer risk in African Americans. LDI Issue Brief, 12, 1-4.
  24. Hall MJ, Reid JE, Burbidge LA, et al (2009). BRCA1 and BRCA2 mutations in women of different ethnicities undergoing testing for hereditary breast-ovarian cancer. Cancer, 115, 2222-2233.
  25. Heimdal K, Maehle L, Moller P (1999). Costs and benefits of diagnosing familial breast cancer. Dis. Markers, 15, 167-173.
  26. Hopwood P, Shenton A, Lalloo F, et al(2001). Risk perception and cancer worry: an exploratory study of the impact of genetic risk counseling in women with a family history of breast cancer. J Med Genet, 38, 139-146.
  27. Hortobagyi GN (1998). Treatment of breast cancer. N Engl J Med, 399, 974-84.
  28. Hopwood P, Shenton A, Lalloo F, et al(2001). Risk perception and cancer worry: an exploratory study of the impact of genetic risk counseling in women with a family history of breast cancer. J Med Gene, 38, 139-145.
  29. Ibrahim EM, Zeeneldin AM, Sadiq BB, et al(2008). The present and the future of breast cancer burden in the Kingdom of Saudi Arabia. Med Oncol, 25, 387-93.
  30. Jacobsen PB, Valdimarsdottier HB, Brown KL et al (1997). Decision-making about genetic testing among women at familial risk for breast cancer. Psychosom Med, 59, 459-466.
  31. Jemal A, Siegel R, Ward E, et al (2009). Cancer Statistics, 2009. CA Cancer J Clin, 54, 225-49.
  32. Kash KM, Ortega-Verdejo K, Dabney MK, et al (2000). Psychosocial aspects of cancer genetics: women at high risk for breast and ovarian cancer. Semin Surg Oncol, 18, 333-338.<333::AID-SSU8>3.0.CO;2-4
  33. Kinney AY, Simonsen SE, Baty BJ, et al (2006). Acceptance of genetic testing for hereditary breast and ovarian cancer among study enrollees from African American kindred. Am J Med Genet A, 140, 813-826.
  34. Kinney AY, Gammon A, Coxworth J, et al(2010). Exploring attitudes, beliefs, and communication preferences of Latino community members regarding BRCA1/2 mutation testing and preventive strategies. Genet Med, 12, 105-115.
  35. Lerman, C, Daly M, Masny A, et al(1994). Attitudes about genetic testing for breast-ovarian cancer susceptibility. J Clin Oncol, 12, 843-850.
  36. Lerman C, Seay J, Balshem A et al (1995). Interest in genetic testing among first-degree relatives of breast cancer patients. Am J Med Genet, 57, 385-392.
  37. Lerman C, Narod S, Schulman K et al (1996). BRCA1 testing in families with hereditary breast-ovarian cancer. A prospective study of patient decision making and outcomes. JAMA, 275, 1885-1892.
  38. Lerman C, Biesecker B, Benkendorf JL, et al (1997). Controlled trial of pretest education approaches to enhance informed decision-making for BRCA1 gene testing. J Natl Cancer Inst, 89,148-57.
  39. Lipkus IM, Iden D, Terrenoire J et al (1999). Relationships among breast cancer concern, risk perceptions, and interest in genetic testing for breast cancer susceptibility among African-American women with and without a family history of breast cancer. Cancer Epidemiol Biomarkers Prev, 8, 533-539.
  40. MacNew HG, Rudolph R, Brower ST, et al(2010). Assessing the knowledge and attitudes regarding genetic testing for breast cancer risk in our region of southeastern Georgia. Breast J,16,189-92.
  41. Meischke H, Bowen D, Kuniyuki A (2001). Awareness of genetic testing for breast cancer risk among women with a family history of breast cancer: effect of women's information sources on their awareness. Cancer Detect Prev, 25, 319-327.
  42. Mogilner A, Otten M, Cunningham JD, Brower ST (1998). Awareness and attitudes concerning BRCA gene testing. Ann Surg Oncol, 5, 607-612.
  43. Mouchawar J, Byers T, Cutter G, et al(1999). A study of the relationship between family history of breast cancer and knowledge of breast cancer genetic testing prerequisites. Cancer Detect. Prev, 23, 22-30
  44. National Comprehensive Cancer Network (2008). Genetic familial hereditary risk assessment: breast and ovarian cancer V.I. Fort Washington, PA: National Comprehensive Cancer Network; 2008.
  45. Olopade OI, Fackenthal JD, Dunston G, Tainsky MA et al (2003). Breast cancer genetics in African Americans. Cancer, 97, 236-245.
  46. Pal T, Permuth-Wey J, Betts JA, et al (2005). BRCA1 and BRCA2 mutations account for a large proportion of ovarian carcinoma cases. Cancer, 104, 2807-2816.
  47. Paradiso A, Bruno M, Cicoria O et al (2004). Analysis of the reasons for accepting or declining participation in a genetic breast cancer research: a hospital-based population study. Tumori, 90, 435-436.
  48. Peto R, Boreham J, Clarke M, et al(2000). UK and USA breast cancer deaths down 25% in year 2000 at ages 20-69 years. Lancet, 355, 1822.
  49. Press NA, Yasui Y, Reynolds S et al (2001). Women's interest in genetic testing for breast cancer susceptibility may be based on unrealistic expectations. Am J Med Genet, 99, 99-110.<00::AID-AJMG1142>3.0.CO;2-I
  50. Price MA, Butow PN, Lo SK, et al (2007). Kathleen Cunningham Consortium for Research into Familial Breast Cancer (kConFab) Psychosocial Group. Predictors of cancer worry in unaffected women from high risk breast cancer families: risk perception is not the primary issue. J Genet Couns, 16, 635-44.
  51. Ropka ME, Wenzel J, Phillips EK, et al(2006). Uptake rates for breast cancer genetic testing: a systematic review. Cancer Epidemiol Biomarkers Prev, 15, 840-855.
  52. Saudi Cancer Registry (2009). Cancer Incidence Report 2005, Riyadh, Saudi Arabia.
  53. 2005. (accessed 20th June 2012)
  54. Schwartz GF, Hughes KS, Lynch HT, et al (2008). Consensus Conference Committee. Proceedings of the International Consensus Conference on breast cancer risk, genetics, & risk management. Cancer, 113, 2627-2637.
  55. Schwartz MD, Peshkin BN, Tercyak KP, et al(2005). Decision making and decision support for hereditary breast-ovarian cancer susceptibility. Health Psychol, 24, S78-S84.
  56. Schwartz MD, Benkendorf J, Lerman C et al (2001). Impact of educational print materials on knowledge, attitudes, and interest in BRCA1/ BRCA2: testing among Ashkenazi Jewish women. Cancer, 92, 932-940.<932::AID-CNCR1403>3.0.CO;2-Q
  57. Struewing JP, Lerman C, Kase RG et al (1995). Anticipated uptake and impact of genetic testing in hereditary breast and ovarian cancer families. Cancer Epidemiol Biomarkers Prev, 4, 169-173.
  58. Tambor ES, Rimer BK, Strigo TS (1997). Genetic testing for breast cancer susceptibility: awareness and interest among women in the general population. Am J Med Genet, 68, 43-49.<43::AID-AJMG8>3.0.CO;2-Z
  59. United States Preventive Services Task Force (2005). Genetic risk assessment and BRCA mutation testing for breast and ovarian cancer susceptibility: recommendation statement. Ann Intern Med, 143, 355-361.
  60. Vadaparampil ST, Wideroff L, Breen N, et al(2006). The impact of acculturation on awareness of genetic testing for increased cancer risk among Hispanics in the year 2000 National Health Interview Survey. Cancer Epidemiol Biomarkers Prev, 15, 618-623.
  61. Weitzel JN, Lagos V, Blazer KR, et al (2005). Prevalence of BRCA mutations and founder effect in high risk Hispanic families. Cancer Epidemiol Biomarkers Prev, 14, 1666- 1671.
  62. Wideroff L, Vadaparampil ST, Breen N, Croyle RT, Freedman AN (2003). Awareness of genetic testing for increased cancer risk in the year 2000 National Health Interview Survey. Community Genet, 6, 147-156.

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