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Knowledge, Attitudes, and Practice Regarding Genetic Testing and Genetic Counselors in Jordan: A Population-Based Survey

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Journal of Genetic Counseling

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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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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Correspondence to Mamoun Ahram.

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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

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