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

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.

Differences in attitudes toward genetic testing among the public, patients, and health-care professionals in Korea

“…In the present study, the proportion of respondents who had prior knowledge of genetic testing was much higher than that reported in prior studies conducted in other countries [3,7,8,23]. Phuong et al indicated that 47% (95% CI 46.1-48.0%) of the U.S. population was aware of genetic testing.…”

“…Consequently, identifying differences in viewpoints on genetic testing has grown in importance, and studies have begun to assess awareness and attitudes toward genetic testing among people throughout the world [1,[3][4][5][6][7][8][9][10][11]. Overall, most of these studies have focused on particular demographic groups or specific medical conditions, and while recent literature reviews suggest that public attitudes toward genetic testing are positive, they have been found to vary according to sex, age, education level, health status, etc [4].…”

Experiences of breast cancer in Arab countries. A thematic synthesis

“…This fear may be intensified and more common in this ethnic group because of the frequent practice of the family vetting potential marriage partners for suitability, fertility and character [29,30]. In addition, some Arab countries have a mandatory pre-marital genetic testing due to the high rates of consanguineous marriage and the increased transmission rates of autosomal recessive disorders, such as β-thalassemia [44]. In contrast, women with limited access to information perhaps focus more on their fear that breast cancer is contagious, and thus perceive themselves to be a risk to their family's physical well-being.…”

Secuenciación de nueva generación (NGS) de ADN: presente y futuro en la práctica clínica

“…GnomAD, ClinVar, OMIM, COSMIC y Human Gene Mutation Database son bases de datos confiables para examinar la asociación de una variante a enfermedad (tabla 2) (33). Este proceso de interpretación deberá ser realizado idealmente por el laboratorio como parte de su servicio y explicado al paciente por profesionales con entrenamiento calificado en asesoría genética (40). En caso de que todavía existan dudas sobre la significancia clínica de los hallazgos o aún no se hayan identificado variantes que expliquen la clínica del paciente, se puede considerar como opción la secuenciación de los familiares del paciente para ayudar a clarificar la relación de la presencia de una variante con la presentación de la enfermedad (41).…”