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Alswaidi FM Memish ZA O'Brien SJ Al-Hamdan NA Al-Enzy FM Alhayani OA Al-Wadey AM 《Journal of genetic counseling》2012,21(2):243-255
Results from a screening program for sickle cell disease and β-thalassemia suggest about 90% of couples in Saudi Arabia at
risk of having affected children still decide to marry. This study determined the rate of at-risk marriages and identified
several factors that may prevent at risk couples from marrying. The marriage status of 934 at-risk couples was determined
from original screening program records in the Ministry of Health. Of 934 couples, 824 married (88.2%) and 110 (11.8%) did
not. A case–controlled study was conducted on 104 couples who did not marry (cases) and 478 couples who did marry (controls)
in order to assess relationships between various cultural and social factors and marriage decisions. In the case-controled
study, 28.8% of couples (30/104) who did not marry (cases) knew their disease or carrier status before screening compared
to 18% (86/478) of those who married (controls). Reasons couples gave for proceeding with marriage included: wedding plans
could not be canceled, and fear of social stigma. Couples who did not marry reported being influenced by prior knowledge of
their disease or carrier status and whether they or family members were affected. Approximately half of the cases and controls
(n = 270, 46.4%) thought it best to undergo screening before proceeding with the engagement and wedding plans. Most couples
received no advice to participate in genetic counseling services. Marriage decisions for the small number who received genetic
counseling (n = 168, 27.6%) did not differ significantly from those that received no counseling. Recommendations are made for improving
the effectiveness of this screening program. 相似文献
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