Saudi Premarital Screening Program: Public view after 3 years of implementation.

Article Info

Authors

Volume: 15
Year: 2008
Month: July
Issue: 3
Pages: 19-20

Reference: Al-Quwaidhi A., Al-Mazroa M., .Saudi Epidemiology Bulletin. 2008;15(3):19-20.

The Saudi Premarital Screening Program (SPSP) became mandatory since 1425 H. This study aims to explore public attitudes towards consanguinity, SPSP legislation, increasing the number of screened diseases and the different reproductive alternatives for incompatible couples.

This cross-sectional study was conducted at a sample of Primary Health Care (PHC) centers of the Ministry of Health (MOH) in Al-Ahssa region, Eastern Province, Saudi Arabia. Stratified single-stage cluster sampling with probability proportionate to size was used as a sampling method to select centers from the 3 health sectors of the region. The total sample size was 356 randomly selected Saudi visitors to the sampled centers, 18 years and above, with equal gender distribution. A pre-designed interview-based questionnaire was used for data collection.

The sample consisted of 178 males and 178 females. Their ages ranged from 18 to 66 years (mean 33.2, Standard Deviation (SD) ± 11.46 years). Eighty two (23.0%) were single, 9 (2.5%) were engaged, and 251 (70.5%) were married. Regarding their place of residence, 202 (56.7%) were living in cities and 154 (43.3%) in villages. Thirty six (10.1%) were illiterate, 64 (18.0%) had primary education, 117 (32.9%) had high-school, and 64 (18.0%) were university graduates.

Among participants 160 (44.9%) believed that consanguineous marriage was a good practice, while 218 (61.2%) believed that it may cause diseased offspring. The vast majority (325 or 91.3%) agreed on the compulsory application of the SPSP. Among those who agreed, 236 (72.6%) justified their agreement by stating "to prevent transmission of genetic blood diseases to offspring" (Table 1). Only 21 (5.9%) knew that Sickle Cell Disease and Thalassemia were the only 2 diseases being screened for at that time, and 244 (68.5%) supported raising the number of screened diseases.

Regarding attitudes towards incompatible results, 163 (45.8%) stated that they would break off the engagement, 112 (31.5%) stated that the decision would be very difficult, and 55 (15.4%) would continue with the engagement and marriage as belief in Allah’s will (Table 2). Moreover, 189 (53.1%) agreed on providing incompatible couples who proceed with the marriage with reproductive alternatives, the most preferred being pre-implantation diagnosis (28.6%). Among those who disagreed (n=77), 36 (46.8%) justified their refusal as interference with Allah's will. The majority (80.6%) agreed on early screening of high school and university students.

Illiteracy was found to have a negative effect. Attitudes of participants who did not have genetic blood diseases or affected children were better than those of affected participants and those who had affected children.

This study highlighted the fact that consanguineous marriages are still preferred by a large proportion of the Saudi population, despite their awareness of its possible harms. The majority accepted the SPSP and its mandatory application, and supported increasing the number of screened diseases, as well as changing its timing to a stage of life prior to engagement.

Editorial note:

Inherited disorders represent a major health problem in the Arab World including Saudi Arabia, where consanguineous marriages are common. The frequency of consanguineous marriages has been estimated as 60-65% in Saudi Arabia¹, 50.3% in Jordan, 54.3% in Kuwait, 28.9% in Egypt, and 26.0% in Lebanon.²

The Saudi premarital screening program is a mandatory, targeted screening (primary prevention) for all Saudi couples willing to get married. The most prevalent inherited hemoglobinopathies in the Kingdom, SCD and Thalassemia were the only two diseases screened for at the time this study was conducted. The main objectives of the SPSP are to avoid or reduce risky marriages, to determine the magnitude and distribution of diseased and carriers of SCD and Thalassemia, and to educate non-compatible couples about the probabilities of their having affected offspring and possible alternatives to cancelling the marriage. The screening result is mandatory and required to complete the official marriage license. Compatible couples are provided with "compati-bility certificates", while Incompatible couples are referred to a genetic counseling clinic. However, counseling isnon-directive and the couple has the choice to proceed with the marriage regardless of the screening result, in which case they are given "incompatibility certificates" after obtaining their signatures and providing them with health education.³

This study confirms the popularity of consanguineous marriages among Saudis, mostly attributed to social and traditional values, despite the fact that Islamic teachings discourage first-cousin marriages.⁴Religious leaders in the community therefore have a vital responsibility to conduct intensive education in mosques, media, and other available channels. In spite of the fact that the majority believed that consanguineous marriages may lead to diseased offspring, a large proportion still encouraged this practice. This has been reported by other Gulf countries, where up to 50% prefer consanguineous marriages.⁵

The vast majority of the study population supported the compulsory application of the SPSP, which was much higher than reported by other studies.⁵ This positive attitude was independent of gender, residence, and whether the subject had a genetic blood disease or affected children. This wide acceptance is essential for success and continuation of the SPSP.

According to data of the first 3 years of implementation of the SPSP, the majority of incompatible couples are still completing the marriage in spite of their positive results.⁶ It is therefore essential to provide such couples with reproductive alternatives. Over half of study participants agreed on this matter. Among those, Pre-implantation diagnosis through in-vitro fertilization was preferred by 28.6%, followed by contraception (22.2%), then prenatal diagnosis (12.7%). These results are similar to those reported by a study from King Faisal Specialist Hospital and Research Center, Riyadh.⁷ Prenatal diagnosis is specific and sensitive for detection of hemoglobinopathies, but is not yet implemented in Saudi Arabia except for severe abnormalities.⁸

It was recommended to intensify health education on the possible health consequences of consanguineous marriages through educational campaigns at PHC centers, schools, and mass media. Religious leaders of the community should be involved in clarification of Islamic teachings regarding consanguineous marriages, premarital testing, and reproductive alternatives.

References

1. El-Hazmi MAF. The natural history and the national pre-marital screening program in Saudi Arabia. Saudi Med J. 2004; 25(11):1549-1554.

2. Garbutt K, editor. Inbreeding and genetic disorder among Arab population [monograph on the internet]. West Virginia: The Eberly College of Arts and Sciences, West Virginia University; 2006 [cited 2007 October 16]. http://www.as.wvu.edu/~kgarbutt/QuantGen/Gen535Papers2/Inbreeding.htm

3. AlHamdan NA, AlMazrou YY, AlSwaidi FM, Choudhry AJ. Premarital screening for thalassemia and sickle cell disease in Saudi Arabia. Genet Med. 2007; 9(6):372-377.

4. Albar MA. Counselling about genetic disease: an Islamic perspective. Eastern Mediterranean Health Journal. 1999; 5(6):1129-1133.

5. Al-Gazali LI. Attitudes toward genetic counseling in the United Arab Emirates. Community Genet. 2005; 8(1):48-51.

6. General directorate of Non-communicable diseases, MOH, Saudi Arabia. The premarital screening program report, 1427 H (Arabic).

7. Alsulaiman A, Hewison J. Attitudes to prenatal and preimplantation diagnosis in Saudi parents at genetic risk. Prenatal Diagnosis. 2006; 26(11):1010-1014.

8. Alkuraya FS, Kilani RA. Attitude of Saudi families affected with hemoglobinopathies towards prenatal screening and abortion and the influence of religious ruling (Fatwa). Prenatal Diagnosis. 2001; 21(6):448-451.

Table (1): Public attitude towards the mandatory application of SPSP, Al-Ahssa, 2007 (n=325).

Attitude	No.	%	95% CI
Reasons for agreeing
To prevent transmission of genetic blood diseases to the offspring	236	72.6	67.4-77.4%
To prevent transmission of genetic blood diseases from one of the couple to the other	32	9.8	6.9-13.7%
To make sure that the person that will be married is healthy	32	9.8	6.9-13.7%
To ensure own fitness for marriage	17	5.2	3.2-8.4%
Don't know	8	2.5	1.1-5.0%
Reason for Disagreeing
This is an interference with Allah's will	6	54.5	23.4-83.3%
Such test results are an insult to the person	3	27.3	6.0-61.0%
The family may prevent continuation of marriage in case of positive results	1	9.1	0.2-41.3%
Don't know	1	9.1	0.2-41.3%

دراسة اتجاهات المجتمع نحو برنامج الفحص قبل الزواج بعد ثلاث سنوات من تطبيقه بالمملكة العربية السعودية.

تعتبر الأمراض الوراثية من المشاكل الصحية الرئيسية في العالم العربي بما فيه المملكة العربية السعودية، و يُعدّ زواج الأقارب سبباً رئيسياً في تركّز تلك الأمراض بها. و يعتبر الفحص قبل الزواج من أهم الإجراءات التي تمنع ظهور هذه الأمراض.

و لقد تم تطبيق برنامج الفحص قبل الزواج في المملكة للكشف عن فقر الدم المنجلي و الثلاسيميا كإجراء إلزامي منذ بداية عام 1425 هـ قام فريق من برنامج الوبائيات الحقلي بدراسة مقطعية تهدف إلى استكشاف اتجاهات المجتمع نحو زواج الأقارب، و تقييم رأيه في إلزامية برنامج الفحص قبل الزواج، و دراسة اتجاهاته نحو زيادة الأمراض التي يتم الكشف عنها، و نحو البدائل المختلفة التي من الممكن أن يُزوّد بها أولئك الأزواج غير المتوافقين عبر الفحص. تم تنفيذ الدراسة في عيّنة من مراكز الرعاية الصحية الأولية التابعة لوزارة الصحة في محافظة الأحساء من المنطقة الشرقية بالمملكة. و تم اختيار العيّنة من المراكز الصحية بالقطاعات الصحية الثلاثة بالمحافظة عشوائياً.

بلغ حجم العيّنة الكلّي 356 زائراً سعودياً للمراكز الصحية المختارة، تم اختيارهم عشوائياً و بالتساوي بين الذكور و الإناث الذين كانت أعمارهم ثمانية عشر عاماً فما فوق. و تم تصميم استبيان لجمع البيانات من المشاركين عن طريق المقابلة الشخصية. شملت الدراسة 178 مشاركاً من الذكور و 178 من الإناث، و كانت أعمارهم تتراوح ما بين 18 – 66 عاماً بمتوسط و انحراف معياري قدره 33.2 ± 11.46 عاماً. و أظهرت الدراسة أن 160 شخصاً من المشاركين (44.9%) رأوا بأن زواج الأقارب يعتبر عادة جيدة، مقارنةً بـ 137 شخصاً (38.5%) خالفوهم في ذلك. و كان 218 فرداً من المشاركين (61.2%) يرون بأن زواج الأقارب قد يؤدي إلى إنجاب ذرية غير سليمة، بينما لم يَرَ 93 من المشاركين (26.1%) ذلك.

الغالبية العظمى (325 فرداً) من المشاركين بالدراسة (91.3%) كانوا موافقين على إلزامية برنامج فحص ما قبل الزواج. كما أظهرت الدراسة أن 21 شخصاً (5.9%) فقط من مجموع المشاركين كانوا يعلمون بأن المرضين اللذين يتم الكشف عنهما حالياً هما فقر الدم المنجلي و الثلاسيميا فقط، لكن 244 فرداً (68.5%) منهم أيّدوا زيادة عدد الأمراض التي يتم الكشف عنها.

وافق 189 فرداً (53.1%) على تزويد الأزواج غير المتوافقين ببدائل تضمن لهم عدم إنجاب أطفال مرضى، و كان أكثر البدائل المفضلة هو اختيار الأجنّة السليمة قبل زراعتها في الرحم، حيث فضّله 54 فرداً (28.6%). و استحسن أغلب المشاركين (287 أو 80.6%) إجراء الفحص في مرحلة مبكرة مثل أثناء الدراسة الثانوية أو الجامعية.

كما أظهرت الدراسة أن 142 شخصاً (39.9%) من المشاركين قد قيّموا نتائج و آثار البرنامج بأنها ممتازة، مقارنةً بـ 13 شخصاً فقط (3.7%) قيّموها بأنها ضعيفة.

و قد لوحظ بأن الأميّة أثّرت سلبياً على اتجاهات المجتمع نحو القضايا السابقة، كما أن اتجاهات المشاركين الذين لم يكن لديهم أمراض دم وراثية أو أطفال مرضى كانت أفضل من اتجاهات أولئك المشاركين الذين كانت لديهم أمراض دم وراثية أو أطفال مرضى.

تمت التوصية بتكثيف التثقيف الصحي و الديني لدى المجتمع عن طريق كل القنوات الممكنة، مثل المدارس و الإعلام و المساجد و مراكز الرعاية الصحية الأولية، بخصوص الأضرار المترتبة على زواج غير المتوافقين وراثياً، كما تمت التوصية بتغيير توقيت الفحص بحيث يشمل طلاب الثانوية و الجامعات قبل مرحلة الخطبة و عقد القران. تمت التوصية أيضاً على زيادة عدد الأمراض التي يتم الكشف عنها لتشمل أمراضاً أخرى ذات أهمية عامة مثل فقر الدم الفولي (G6PD Deficiency) و الإيدز و التهاب الكبد الفيروسي من النوع (ب) و (ج) و الزهري التناسلي. كما أوصت الدراسة بتنفيذ أبحاثاً خاصة بمدى إمكانية و جدوى توفير بدائل وراثية للأزواج غير المتوافقين وراثياً.