Abstract
Genetic testing has a potential in the prevention of genetic diseases, particularly in communities with high rates of consanguineous marriage. Therefore, knowledge, practice, and attitudes of the public in Jordan regarding genetic testing were investigated. Individuals (N = 3,196) were questioned about the concepts of genetic testing and genetic counselors, if they underwent any genetic tests, the type of test, the method of consenting to the test, as well as their level of satisfaction with the privacy of the genetic testing service. The likelihood of pursuing predictive genetic testing for cancer was also investigated. Although almost 70 % of respondents knew the term “genetic testing,” only 18 % had undergone genetic testing, primarily the mandatory premarital test. In addition, there was a lack of general knowledge about genetic counselors. Many of those who had genetic testing (45 %) indicated they did not go through a consent process, and a lack of consent was significantly related to dissatisfaction with the privacy of the service. Approximately 55 % of respondents indicated they would potentially pursue predictive genetic testing for cancer. Going for routine health checkups was not significantly correlated with either actual or potential uptake of genetic testing, suggesting health care providers do not play an influential role in patients’ testing decisions. Our results show a gap between the knowledge and uptake of genetic testing and may help to guide the design of effective strategies to initiate successful genetic counseling and testing services.
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Ahmad, M., Al Gamal, E., Othman, A., & Nasrallah, E. (2011). Knowledge, attitudes and practices towards cancer prevention and care in Jordan. Report. Amman: King Hussein Institute for Biotechnology and Cancer (KHIBC).
Ahram M., Othman A., & Shahrouri, M. (2012). Public perception towards biobanking in Jordan. Biopreserv Biobank 10(4), 361–365.
Ahram, M., Othman, A., & Shahrouri, M. (2013). Public support and consent preference for biomedical research and biobanking in Jordan. European Journal of Human Genetics, 21(5), 567–570.
Akhu-Zaheya, L. M., Jagbir, M. T., Othman, A., & Ahram, M. (2014). Media use for seeking health/cancer-related information: findings from knowledge, attitudes and practices towards cancer prevention and care survey in Jordan. International Journal of Nursing Practice, 20(6), 608–615.
Al-Owain, M., Al-Zaidan, H., & Al-Hassnan, Z. (2012). Map of autosomal recessive genetic disorders in Saudi Arabia: concepts and future directions. American Journal of Medical Genetics A, 158A(10), 2629–2640.
Amin, T. T., Al-Wadaani, H. A., Al-Quaimi, M. M., Aldairi, N. A., Alkhateeb, J. M., & Al-Jaafari, A. A. (2012). Saudi women’s interest in breast cancer gene testing: possible influence of awareness, perceived risk and socio-demographic factors. Asian Pacific Journal of Cancer Prevention, 13(8), 3879–3887.
Aro, A. R., Hakonen, A., Hietala, M., Lonnqvist, J., Niemela, P., Peltonen, L., et al. (1997). Acceptance of genetic testing in a general population: age, education and gender differences. Patient Education and Counseling, 32(1–2), 41–49.
Ben Fatma, L., Landolsi, A., Chouchene, L., Ghaha, R., Boughattas, H., Bibi, M., et al. (2005). Knowledge, attitude and behavior about the inherited predisposition to cancer. A survery of a population without any history of cancer in central Tunisia. La Tunisie Médicale, 83(5), 262–268.
Bittles, A. H. (2012). Consanguinity in Context (Cambridge Studies in Biological and Evolutionary Anthropology. Cambridge: Cambridge University Press.
Blanchette, P. S., Spreafico, A., Miller, F. A., Chan, K., Bytautas, J., Kang, S., Bedard, P. L., Eisen, A., Potanina, L., Holland, J., Kamel-Reid, S., McPherson, J. D., Razak, A. R., & Siu, L. L. (2014). Genomic testing in cancer: patient knowledge, attitudes, and expectation. Cancer, 120(19), 3066–3073.
Burke, W. (2004). Genetic testing in primary care. Annual Review of Genomics and Human Genetics, 5, 1–14.
Cherkas, L. F., Harris, J. M., Levinson, E., Spector, T. D., & Prainsack, B. (2010). A survey of UK public interest in internet-based personal genome testing. PloS One, 5(10), e13473.
Demeure, M. J. (2009). Personalized medicine: the future is not what it used to be. Surgery, 146(6), 971–978.
Emery, J., & Hayflick, S. (2001). The challenge of integrating genetic medicine into primary care. British Medical Journal, 322(7293), 1027–1030.
Escher, M., & Sappino, A. P. (2000). Primary care physicians’ knowledge and attitudes towards genetic testing for breast-ovarian cancer predisposition. Annals of Oncology, 11(9), 1131–1135.
Etchegary, H., Cappelli, M., Potter, B., Vloet, M., Graham, I., Walker, M., et al. (2010). Attitude and knowledge about genetics and genetic testing. Public Health Genomics, 13(2), 80–88.
Freedman, A., Wideroff, L., Olson, L., Davis, W., Klabunde, C., Srinath, K., et al. (2003). US physicians’ attitudes toward genetic testing for cancer susceptibility. American Journal of Medical Genetics Part A, 120(1), 63–71.
Fry, A., Campbell, H., Gudmundsdottir, H., Rush, R., Porteous, M., Gorman, D., et al. (1999). GPs’ views on their role in cancer genetics services and current practice. Family Practice, 16(5), 468–474.
Hamamy, H., Al-Hait, S., Alwan, A., & Ajlouni, K. (2007). Jordan: communities and community genetics. Public Health Genomics, 10(1), 52–60.
Henneman, L., Timmermans, D. R., & van der Wal, G. (2004). Public experiences, knowledge and expectations about medical genetics and the use of genetic information. Community Genetics, 7(1), 33–43.
Henneman, L., Vermeulen, E., van El, C. G., Claassen, L., Timmermans, D. R., & Cornel, M. C. (2013). Public attitudes towards genetic testing revisited: comparing opinions between 2002 and 2010. European Journal of Human Genetics, 21(8), 793–799.
Ip, H. W., & So, C. C. (2013). Diagnosis and prevention of thalassemia. Critical Reviews in Clinical Laboratory Sciences, 50(6), 125–141.
Jallinoja, P., & Aro, A. R. (2000). Does knowledge make a difference? The association between knowledge about genes and attitudes toward gene tests. Journal of Health Community, 5(1), 29–39.
Kawar, L. N. (2013). Barriers to breast cancer screening participation among Jordanian and Palestinian American women. European Journal of Oncology Nursing, 17(1), 88–94.
Khoury, S. A., & Massad, D. (1992). Consanguineous marriage in Jordan. American Journal of Medical Genetics, 43(5), 769–775.
Kish, L. (1965). Survey Sampling. New York: Wiley.
Lanie, A. D., Jayaratne, T. E., Sheldon, J. P., Kardia, S. L. R., Anderson, E. S., Feldbaum, M., & Petty, E. M. (2004). Exploring the public understanding of basic genetic concepts. Journal of Genetic Counseling, 13(4), 305–320.
Lehmann, L. S., Weeks, J. C., Klar, N., & Garber, J. E. (2002). A population-based study of Ashkenazi Jewish women’s attitudes toward genetic discrimination and BRCA1/2 testing. Genetics in Medicine, 4(5), 346–352.
Leighton, J. W., Valverde, K., & Bernhardt, B. A. (2012). The general public’s understanding and perception of direct-to-consumer genetic test results. Public Health Genomics, 15(1), 11–21.
Maio, M., Carrion, P., Yaremco, E., & Austin, J. C. (2013). Awareness of genetic counseling and perceptions of its purpose: a survey of the Canadian public. Journal of Genetic Counseling, 22(6), 762–770.
McCahon, D., Holder, R., Metcalfe, A., Clifford, S., Gill, P., Cole, T., et al. (2009). General practitioners’ attitudes to assessment of genetic risk of common disorders in routine primary care. Clinical Genetics, 76(6), 544–551.
Memish, Z. A., & Saeedi, M. Y. (2011). Six-year outcome of the national premarital screening and genetic counseling program for sickle cell disease and beta-thalassemia in Saudi Arabia. Annals of Saudi Medicine, 31(3), 229–235.
Ministry-of-Health (2011). Annual Statistical Book retrieved from http://www.moh.gov.jo/AR/Documents/rep2012.pdf.
Minucci, A., Giardina, B., Zuppi, C., & Capoluongo, E. (2009). Glucose-6-phosphate dehydrogenase laboratory assay: How, when, and why? IUBMB Life, 61(1), 27–34.
Morgan, S., McLeod, D., Kidd, A., & Langford, B. (2004). Genetic testing in New Zealand: the role of the general practitioner. Journal of the New Zealand Medical Association, 117(1206), 2.
Morren, M., Rijken, M., Baanders, A. N., & Bensing, J. (2007). Perceived genetic knowledge, attitudes towards genetic testing, and the relationship between these among patients with a chronic disease. Patient Education and Counseling, 65(2), 197–204.
Osawa, M., Muto, A., Shiraiwa, Y., Hirasawa, K., Yoshida, R., Murasugi, H., et al. (1994). Public perceptions of genetic counseling. Intractable neurological disorders, human genome research and society (pp. 226–234). Christchurch: Eubios Ethics Institute.
Oseni, T., & Jatoi, I. (2008). An overview of the role of prophylactic surgery in the management of individuals with a hereditary cancer predisposition. The Surgical Clinics of North America, 88(4), 739–758. vi.
Othman, A., Ahram, M., Obeidat, N., & Tarawneh, M. (2013). Barriers for mammography among Non-adherent women in Jordan: a national survey. Life Science Journal, 10(4), 2268–2274.
Resta, R., Biesecker, B. B., Bennett, R. L., Blum, S., Hahn, S. E., Strecker, M. N., & Williams, J. L. (2006). A new definition of genetic counseling: national society of genetic counselors task force report. Journal of Genetic Counseling, 15, 77–83.
Riesgraf, R. J., Veach, P. M., MacFarlane, I. M., & LeRoy, B. S. (2014). Perceptions and Attitudes About Genetic Counseling Among Residents of a Midwestern Rural Area. Journal of Genetic Counseling, 1–15.
Sanderson, S. C., Wardle, J., Jarvis, M. J., & Humphries, S. E. (2004). Public interest in genetic testing for susceptibility to heart disease and cancer: a population-based in the UK. Preventive Medicine, 39, 458–464.
Tadmouri, G. O., Nair, P., Obeid, T., Al Ali, M. T., Al Khaja, N., & Hamamy, H. A. (2009). Consanguinity and reproductive health among Arabs. Reproductive Health, 6, 17.
Taha, H., Al-Qutob, R., Nystrom, L., Wahlstrom, R., & Berggren, V. (2012). “Voices of fear and safety” women’s ambivalence towards breast cancer and breast health: a qualitative study from Jordan. BMC Womens Health, 12, 21.
Taha, H., Al-Qutob, R., Nystrom, L., Wahlstrom, R., & Berggren, V. (2013). “Would a man smell a rose then throw it away?” Jordanian men’s perspectives on women’s breast cancer and breast health. BMC Womens Health, 13, 41.
Teebi, A. S., & Teebi, S. A. (2005). Genetic diversity among the Arabs. Community Genetics, 8(1), 21–26.
Toiviainen, H., Jallinoja, P., Aro, A. R., & Hemminki, E. (2003). Medical and lay attitudes towards genetic screening and testing in Finland. European Journal of Human Genetics, 11(8), 565–572.
U.S. Preventive Services Task Force. (2005). Genetic risk assessment and BRCA mutation testing for breast and ovarian cancer susceptibility: recommendation statement. Annals of Internal Medicine, 143, 355–361.
World Health Organization (2006). Health System Profile–Jordan. Regional Health Systems Observatory–EMRO retrieved from http://apps.who.int/medicinedocs/documents/s17296e/s17296e.pdf.
Funding
This work was supported by the Arab Fund for Economic and Social Development (AFESD). The KAP Survey was implemented by King Hussein Institute for Biotechnology and Cancer (KHIBC) under The National Life Science Research and Biotechnology Promotion (LSR/BTP) Initiative in Jordan.
Conflict of interest
M. Ahram, M. Soubani, L. Abu Salem, H. Saker, and M. Ahmad declare that they have no conflict of interest.
Human Studies and Informed Consent
All procedures performed in studies involving human participants were in accordance with the ethical standards of the Department of Statistics and a special committee at the Center of Consultation, the University of Jordan, and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
Animal Studies
No animal studies were carried out by the authors for this article.
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Ahram, M., Soubani, M., Abu Salem, L. et al. Knowledge, Attitudes, and Practice Regarding Genetic Testing and Genetic Counselors in Jordan: A Population-Based Survey. J Genet Counsel 24, 1001–1010 (2015). https://doi.org/10.1007/s10897-015-9839-3
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DOI: https://doi.org/10.1007/s10897-015-9839-3