Genetic Clinics in Arab Communities: Meeting Individual, Family and Community Needs

Abstract

Arab societies are characterized by a wide range of family and social structures, religious and legal conventions, and highly variable economic resources. As might be expected under these circumstances, genetic services cannot readily be devised, delivered, and assessed according to a single model. However, in general terms, the provision of genetic services in Arab communities at all population levels is still inadequate given the prevalence and burden of genetic diseases. Improving this situation calls for major educational efforts that include increasing the genetic literacy of the general public, comprehensive courses and campaigns to familiarize primary health care workers with counseling needs and skills and with referral guidelines for high-risk families, updating medical, nursing, and paramedical curricula to incorporate information on community genetics, and training clinical and laboratory genetic specialists to meet the short- and long-term goals of genetic disease prevention and management.

Consanguinity, human evolution, and complex diseases

“…2), the claimed social and cultural advantages, such as ease of marriage arrangements, enhanced female autonomy, more stable marital relationships, greater compatibility with in-laws, lower domestic violence, lower divorce rates, and the economic benefits of reduced dowry and the maintenance of any landholdings (15,41,42,47,(93)(94)(95) have received much less attention than studies into adverse genetic outcomes. It therefore is not surprising that the prevailing Western public and medical opinion with regard to consanguinity is largely negative.…”

“…While in Middle Eastern countries such as Bahrain educational programs aimed at high school children, and through them their parents and relatives, have had a marked beneficial effect in reducing the incidence of sickle cell disease (46). There are, however, current limitations to the success of these initiatives in many low-income countries, in particular the lack of clinicians, genetic counselors, nurses, and scientific support staff with appropriate specialist training (47). Patients referred for genetic counseling may also expect directive advice as to whether or not to proceed with a pregnancy, with failure to provide an opinion interpreted as a lack of knowledge on the part of the clinician (48), and even when specific rulings have been provided by religious authorities permitting prenatal diagnosis of genetic diseases and selective termination of a pregnancy, this option may remain unacceptable to individual couples (15).…”

Consanguineous marriages

“…Wife's parents prefer to have their daughter living near them and to enjoy the presence of their grandchildren. Moreover, wealthy landlords may prefer to keep their property within the family (Bittles 2001;Hamamy and Bittles 2008).…”

Epidemiological profile of common haemoglobinopathies in Arab countries

“…Consanguineous marriage is customary in most if not all Arab communities and intra-familial unions currently account for 20-50 % of all marriages. First cousin unions are especially popular and constitute almost one quarter of all marriages in many Arab countries, particularly the paternal parallel subtype (Bittles 2012;Hamamy and Bittles 2008). Moreover, Arab populations exhibit significant levels of genetic diversity resulting from the admixture with other populations extending from east and south Asia to Europe and Africa (Teebi and Teebi 2005) and resulting in the present day molecular profile of the haemoglobinopathies which are known to be common genetic diseases among Arabs with reported carrier rates of 1-11 % for β-thalassaemia, 1-58 % for α-thalassaemia and 0.3-30 % for sickle cell trait (Al-Gazali et al 2006;Alwan and Modell 1997;Haj Khelil et al 2010;Hamamy and Alwan 1994;Teebi and Farag 1997).…”