Abstract

Genetic counseling services have only recently been introduced in most Arab countries, and their utilization is increasing. Prenatal genetic counseling is essential, particularly in the Arab context, which is characterized by high rates of consanguinity. Nevertheless, little is known about the decisions faced by parents and the factors underlying the complex decision making that must occur when accessing these services in Arab countries. Herein, we performed a narrative review to discuss the reported experiences of parents accessing genetic counseling in the prenatal setting in the 22 Arab countries. We also highlight the different types of decisions encountered and the factors influencing them. We report that: (i) utilization of genetic counseling services varies across different Arab countries; (ii) many factors affect decision making and service utilization, especially religion; and (iii) parents are faced with an array of decisions in the prenatal setting, partly driven by increased utilization of prenatal diagnosis and preimplantation genetic testing in some countries. Our work is the first to highlight the different factors and decisions influencing genetic counseling in Arab countries. Understanding these factors is essential for improving genetic counseling services in the region and helping counselors facilitate informed decision making.

Highlights

  • In a study comparing preimplantation genetic testing (PGT) and prenatal diagnosis in Saudi couples, there were no significant differences between the preferences for any of the two options; in couples who disagreed on which procedure to opt for, more females preferred PGT

  • Among pregnant Israeli Arabs, decision making around termination of pregnancy (TOP) was dependent on many factors, including religion, level of education, age, and having had a previous experience with the relevant condition, whereas TOP was preferred among parents who were educated, younger, and had previous experience with an affected child [56]

  • Similar findings were noted in Kingdom of Saudi Arabia (KSA), where participants reported stigmatization as a factor discouraging them from seeking prenatal genetic counseling

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Summary

Consanguinity and the Need for Prenatal Counseling

Genetic counselors are needed in every health system due to their integral role in increasing knowledge and awareness about hereditary conditions in high-risk/affected individuals, their mode of inheritance, and management options. Counselors help family planning through facilitating informed decision making They do this by providing information about recurrent risk and reproductive options, as well as genetic testing and its limitations [32]. In no small part due to consanguinity, the Arab region is characterized by a high incidence of genetic and congenital disease and hemoglobinopathies [30] Some of those genetic diseases are associated with variable levels of penetrance and expressivity. Most of the 22 Arab countries still do not provide genetic counseling services, despite a significant need, given the elevated consanguinity rates in the region. Many factors affect decision making and service utilization in the region, not least religion Knowledge of these factors, especially religious drivers of acceptance of prena-tal genetic counseling services, can help to improve informed decision making in the Arab world and beyond

The Decisions Faced in Prenatal Settings
Factors Affecting the Acceptance of Prenatal Genetic Counseling Services
Social Factors
Religious Factors
Cultural Factors
Miscellaneous Factors
Genetic Counseling Service in Qatar
Findings
Conclusions
Full Text
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