Premarital screening programme in Saudi Arabia: Insights into men's awareness and perceptions.

This study investigates the knowledge and attitudes of Saudi men on premarital screening, 19 years after its implementation. A cohort of 133 males was examined. Out of the 133 male screening participants, a significant majority of 126 individuals (94.7%) were found to be aware of the premarital screening program. A smaller number of individuals (88, 66.2%) were aware of the conditions detected by the screening. A disagreement developed on the legality of marriage in the event of an adverse test result. Many participants stated that the primary purpose of the premarital screening program was to lessen the social and familial burdens associated with incompatible marriages. Many respondents preferred that the program include mental illness and drug testing. Even if compatibility existed, a sizeable proportion of respondents declined to proceed with the marital procedure if one companion was a carrier. The participants had a clear understanding of the importance of premarital screening. However, this assertion contradicts the current evidence regarding the prevalence of hereditary diseases. To reduce disease burden, the significance of the program and the value of making informed decisions following examinations must be emphasized.

Cette étude examine les connaissances et les attitudes des hommes saoudiens en matière de dépistage prénuptial, 19 ans après sa mise en œuvre. Une cohorte de 133 hommes a été examinée. Sur les 133 hommes participants au dépistage, une majorité significative de 126 personnes (94,7 %) connaissaient le programme de dépistage prénuptial. Un plus petit nombre de personnes (88, 66,2 %) étaient au courant des conditions détectées lors du dépistage. Un désaccord s'est développé sur la légalité du mariage en cas de résultat négatif au test. De nombreux participants ont déclaré que l'objectif principal du programme de dépistage prénuptial était d'alléger les fardeaux sociaux et familiaux associés aux mariages incompatibles. De nombreux répondants préféraient que le programme inclue les tests de dépistage des maladies mentales et des drogues. Même si la compatibilité existait, une proportion importante de personnes interrogées refusaient de procéder à la procédure de mariage si l'un des compagnons était porteur. Les participants comprenaient clairement l'importance du dépistage prénuptial. Cependant, cette affirmation contredit les preuves actuelles concernant la prévalence des maladies héréditaires. Pour réduire le fardeau de la maladie, il faut souligner l'importance du programme et l'importance de prendre des décisions éclairées à la suite des examens.

Comparison Of Knowledge Among Millennials Studying In Non-Medical Universities Regarding Premarital And Prenatal Thalassemia Screening Policies In Pakistan.

Thalassemia awareness among the youth is vital for policy- making to reduce the disease burden in our country. A descriptive cross-sectional study was conducted via simple random sampling technique for which data was collected from May 2020 to May 2021 through Google forms. Results showed that out of a total of 394 non-medical university students, the majority, i.e. 265 (67.3%), were not aware of prenatal screening. Majority, i.e. 117 (29.7%), agreed that the couple should be screened before marriage, and 190 (48.2%) strongly agreed, while 46 (11.7%) had no knowledge. Students, however, believed premarital screening was either unavailable, not possible, or expensive. Other reasons included custom and culture of arranged marriages and religious reasons. The query that if both the parents are carriers and the foetus has thalassemia major should they have an abortion, showed mixed results. The key to controlling thalassemia is awareness of future parents.

Outcome of premarital genetic counseling for couples at risk of hemoglobinopathies in Kingdom of Bahrain.

OBJECTIVES: Hemoglobinopathies are the commonest inherited blood disorders and form a serious burden worldwide, affecting communities, patient quality of life and healthcare resources. The Kingdom of Bahrain has issued a law obligating couples to undergo premarital screening to detect those at risk of having children affected with these disorders. The aim of this study was to analyze the marital decisions of couples at risk for hemoglobinopathies and follow up the outcomes. METHODS: A retrospective study was conducted on couples at risk for hemoglobinopathies identified during the premarital screening program at local health centers in the Kingdom of Bahrain and referred to the genetics department in the Salmaniya Medical Complex for genetic counselling in 2018-2020. RESULTS: A total of 189 couples were found to be at risk for hemoglobinopathies, of whom 159 completed the survey. Of these, 107 (67%) decided to proceed with their marriage and 26 couples achieved pregnancy. Out of 24 at-risk pregnancies with known outcome, 83.3% were spontaneous whereas only 16.7% underwent in-vitro fertilization (IVF) with preimplantation genetic diagnosis (PGD). Eight out of 20 infants born to couples after spontaneous conception were affected. A positive attitude toward IVF with PGD was held by 60% of at-risk couples. CONCLUSIONS: Despite undergoing premarital screening and genetic counselling, a large percentage of at-risk couples proceeded with their marriage. Most of them justified their decision due to the availability of advanced methods that aid in the prevention of having an affected child. However, the cost of such intervention was a major barrier for the majority of couples.

Missed Diagnosis of ß-Thalassemia Trait in Premarital Screening Due to Accompanying HbA2-Yialousa (HBD: c.82G>T).

The diagnosis of ß-thalassemia (ß-thal) trait is usually based on an elevated HbA2 fraction (3.5% to 8%). Co-inheritance of a δ-globin variant along with ß-globin gene defects can interfere with the diagnosis of ß-thal trait by causing normal HbA2 levels. In this report, we present an infant with ß-thal major whose mother's ß-thal trait was missed twice before due to an accompanying δ-globin mutation (HbA2-Yialousa; HBD: c.82G>T), resulting in a borderline HbA2 level. In an individual with microcytosis and hypochromia but an apparently normal HbA2 level, compound heterozygosity for a δ-globin mutation and a ß-thal mutation should be remembered in the differential diagnosis.

Should Premarital Screening for Blood Disorders be an Obligatory Measure in Oman?

Due to the high rate of consanguineous marriages in Oman, there is a correspondingly high prevalence of hereditary blood disorders, particularly sickle cell disease and ß-thalassaemia. This article proposes the possibility of implementing mandatory premarital carrier screening for blood disorders in Oman, while giving due consideration to potential social and cultural obstacles. Although the implementation of such legislation would require collaboration between different sectors and may negatively affect the autonomy of certain individuals, mandatory premarital screening would help to alleviate the burden of hereditary blood disorders on the national healthcare system, as well as reduce avoidable suffering among carriers and their families.

Changes following premarital education for couples with differing degrees of future marital risk.

The present study explored changes in individuals' relationship cognitions and behaviors following premarital education for couples with different risk profiles. The sample consisted of 63 couples who completed the PREPARE program and were classified for future marital risk based on dyadic information. A significant interaction effect was found between risk and time, with individuals in relationships classified as high risk exhibiting greater change at 4 weeks postprogram compared to low-risk individuals. Perceived helpfulness of topics also varied by couple type. Findings provide support for adapting premarital education programs for high-risk couples and offer clinicians and educators specific insights for areas of emphasis when working with different types of couples.

Analysis of ß/α globin ratio by using relative qRT-PCR for diagnosis of beta-thalassemia carriers.

BACKGROUND: Current routine tests for premarital screening of ß-thalassemia carriers are not applicable for diagnosis of rare atypical minor ß-thalassemia cases. A more specialized laboratory evaluation for them is the measurement of ß/α chain synthesis ratio with the assistance of radioactive amino acids. This method is also no longer routinely accessible. Consequently it is required to establish a rapid, trouble-free, and reliable method that encompasses all the cases of ß-thalassemia carriers. Therefore we have determined ß/α-globin mRNA ratio by applying relative qRT-PCR in various ß-thalassemia patients. METHODS: Reticulocytes RNA extraction and subsequent cDNA synthesis were performed, followed by relative qRT-PCR for α- and ß-globin chain genes and ß-actin gene as an endogenous reference. ß/α-Globin gene ratio was then evaluated with the Pfaffl method. RESULTS: The mean of ß/α ratio was 0.99, 0.81, 0.69, and 0.69 for normal population, minor, intermediate, and major ß-thalassemia, respectively. Approximately 6% of cases with minor thalassemia RBC index and normal HbA2 and having a decreased ß/α ratio were located in the minor ß-thalassemia group. The mean of ß/α mRNA ratio in normal individuals and minor ß-thalassemia was significantly different with all other groups (P-value < 0.05). Nevertheless, there was no such association between ß/α mRNA ratio in major and intermediate ß-thalassemia. CONCLUSION: According to the significant differences achieved, no overlapping between minor ß-thalassemia and normal group, capability of diagnosing atypical minor ß-thalassemia, and accessibility of this technique, we can declare that this method could be suggested as a routine premarital screening test for ß-thalassemia carriers.

Premarital Screening and Genetic Counseling program: knowledge, attitude, and satisfaction of attendees of governmental outpatient clinics in Jeddah.

UNLABELLED: Premarital care (PMC) is a worldwide activity that aims to diagnose and treat unrecognized disorders and reduce the transmission of diseases to couples and children. OBJECTIVES: To assess the knowledge and attitude of individuals attending governmental outpatient clinics regarding the Premarital Screening and Genetic Counseling (PMSGC) programs, to identify predictors of high knowledge scores and to determine the satisfaction and recommendations of clients of the program. METHODS: A cross-sectional study was conducted from January to April 2009. Individuals who attended three governmental hospital outpatient clinics on the day of the interview and agreed to participate in the study were recruited. The three hospitals were the two hospitals in Jeddah that offer the PMSGC programs and the King Abdulaziz University Hospital. Ethical considerations were followed and data were collected through an interview questionnaire that had been constructed for the study. The questionnaire asked for personal and socio-demographic data and for responses, on a 5-point Likert scale, to 30 knowledge items and 14 attitude statements. Individuals who participated in the PMSGC program were asked questions regarding the services and activities of the program to ascertain their satisfaction with the program and their recommendations for program improvement. The statistical analysis was performed using SPSS version 16 (SPSS Inc., Chicago, IL). RESULTS: The sample included 655 participants, of whom 38.8% completed the PMSGC program. The participants' knowledge about the program was generally low. Education was the first predictor of a high knowledge score; individuals having ≥ university degree obtained a higher score (aOR=2.73; 95% CI: 1.77-4.20). The second predictor was the nationality of the participants, with Saudis gaining a higher score (aOR=2.04; 95% CI: 1.002-4.16). The third predictor was monthly income. Regarding attitudes, the vast majority of participants (96.0%) strongly agreed on the importance of the program. Concerning the satisfaction levels of those who benefited from the program, 80.0% gave an excellent or very good score for program confidentiality, whereas lower scores were given for counseling. Counseling before the tests was conducted for only 11.7% of the study participants. The majority of participants recommended adding testing for other genetic diseases and STDs as well as additional topics for counseling. CONCLUSION: Knowledge in the general population about the PMSGC program was low. Implementation of school and university educational campaigns is important. Improved counseling and adding new topics for counseling on genetic, chronic, and psychiatric problems; building healthy families; reproduction and fertility are recommended.

Awareness among parents of ß-thalassemia major patients, regarding prenatal diagnosis and premarital screening.

OBJECTIVE: To assess the knowledge among parents of thalassemia major patients about prenatal diagnosis, premarital screening for carrier detection and impact of consanguineous marriage on disease transmission. STUDY DESIGN: Descriptive study. PLACE AND DURATION OF STUDY: The Thalassemia Centre, Sir Ganga Ram Hospital, Lahore, from July to September 2009. METHODOLOGY: One hundred and fifteen parents of ß-thalassemia major patients were enrolled in this study. A questionnaire was developed and parents were interviewed to assess their knowledge about preventive measures against thalassemia major. Parents of patients with all other types of blood disorder were excluded from the study. RESULTS: There were 74 male (64.3%) and 41 female (35.7) patients with mean age of 9.5 ± 5.1 years. Eighty-eight patients (76.5%) were accompanied by mothers and the rest by their fathers. Seventy-four parents (32.1%) were illiterate; among the literates only 7 were highly educated (3%). Ninety-four couples (81.7%) had consanguineous marriage. Fiftytwo parents (44.6%) knew that thalassemia is an inherited disorder. Thirty-eight (33%) had heard about the test for detecting thalassemia carrier. Premarital screening and prenatal diagnosis was known to 97 (84.3%) and 88 (76.5%) parents respectively. Ninety-nine parents (86.1%) knew about the termination of pregnancy on positive prenatal test but only 69 considered it acceptable religiously (60%). Major source of information to the parents were doctors. CONCLUSION: Parental knowledge about thalassemia and its preventive measures was inadequate; this requires intervention in the form of public health education programs concentrating on high risk/targeted population.

Knowledge of HIV/AIDS and use of mandatory premarital HIV testing as a prerequisite for marriages among religious leaders in Sokoto, North Western Nigeria.

BACKGROUND: In Sub-Saharan Africa, an estimated 1.8 million became infected with the HIV in 2009 and Nigeria currently has about 3.4 million people living with HIV. Measures put in place by religious organizations to combat HIV/AIDS in Nigeria include mandatory premarital HIV testing. The knowledge of HIV/AIDS amongst religious leaders in Nigeria has not been sufficiently explored . In this study, we assessed the knowledge of HIV/AIDS amongst religious leaders in Sokoto and if they routinely demand for mandatory premarital HIV testing for all intending couples. METHODS: This was a descriptive cross-sectional study involving 158 religious leaders (30 Christians and 128 Muslims) who officiate or assist during marriages. Data was collected using interviewer and self administered questionnaire which sought such information as biodata, knowledge of HIV/AIDS , speaking to congregation about AIDS and using Premarital HIV status as a pre-requisite for contracting marriages. Data was entered into and analysed using Epi-info computer soft ware program. Level of statistical significance was put at P = 0.05. RESULTS: The ages of the respondents ranged from 35 to 78 years with a mean age of 26.3 ± 20.3 years. Forty nine percent of the respondents had adequate knowledge of HIV/AIDS with more Christian clerics compared to Muslim Clerics having better knowledge of HIV/AIDS (P < 0.0001). All the Christian clerics opined that they would insist on mandatory premarital HIV testing for their subjects before joining them in marriages. CONCLUSION: The results of the study have shown that most of the religious leaders lacked adequate knowledge of HIV/AIDS and the use of mandatory premarital HIV testing is yet to be adopted by the Muslim clerics. Awareness campaigns should be intensified for the religious leaders to improve their knowledge of HIV/AIDS.

Rapid immunization scheme for spouses of individuals estabilished as hepatitis B carriers during premarital tests.

BACKGROUND: The aim of this study was to monitor the cases identified as hepatitis B carriers during premarital tests, to vaccinate their prospective spouses with a rapid vaccination scheme, and to compare the anti-HBs responses with the traditional vaccination scheme. METHODS: Blood samples of 1250 couple spouses were tested for HBsAg and anti-HBs. HBsAg positive cases' fiancées which were found HBV negative were administered a rapid three-dose vaccination scheme on days 0, 7, and 21. Forty controls with similar age and gender were also were administered three doses of the same vaccine. RESULTS: Out of 1250 cases (625 couples), 46 (3.6%) were HBsAg positive, and 40 of them aged between 18 and 39 were admitted to the rapid vaccination program. CONCLUSION: Upon determination of HBsAg positivity in premarital tests, a rapid vaccination program provides early protection, but the 6th and 12th month vaccinations are also required. Anti-HBs response should be monitored.

Six-year outcome of the national premarital screening and genetic counseling program for sickle cell disease and ß-thalassemia in Saudi Arabia.

BACKGROUND AND OBJECTIVES: Saudi Arabia has a high prevalence of hereditary hemoglobin disorders. Data has been collected by the Saudi Premarital Screening and Genetic Counseling Program on the prevalence of sickle cell disease and ß-thalassemia but the outcomes were not quantified. We used six years of premarital screening data to estimate the burden of sickle disease and ß-thalassemia over the program period and to assess the frequency of at-risk marriage detection and prevention. DESIGN AND SETTING: Retrospective review, premarital couples attending premarital and genetic counseling clinics with marriage proposals between 2004 and 2009. METHODS: Blood samples obtained from all couples with marriage proposals between 2004 and 2009 were tested for sickle cell disease and ß-thalassemia. Test results were shared with all examinees and genetic counseling was offered for all at-risk couples. Marriage certificates were issued irrespective of the results and compliance with medical advice was voluntary. RESULTS: Out of all men and women examined, 70,962 (4.5%) and 29,006 (1.8%) were carriers or cases of sickle cell disease and ß-thalassemia, respectively. While the prevalence of sickle cell disease was constant between 2004 and 2009 (average 45.1 per 1000 examined persons, P=.803), the prevalence of ß-thalassemia steadily decreased from 32.9 to 9.0 per 1000 examined persons (P<.001). The frequency of at-risk couples decreased by about 60% between 2004 and 2009 (from 10.1 to 4.0 per 1000 examined persons, P<.001). The frequency of voluntary cancellation of marriage proposals among at-risk couples showed more than 5-fold increase between 2004 and 2009 (from 9.2% to 51.9%, P<.001). The eastern region had 58% of all detected at-risk marriages and showed the greatest decline in detection and increase in prevention over time compared to other regions of Saudi Arabia. CONCLUSION: Six years of premarital screening in Saudi Arabia markedly reduced the number of at-risk marriages, which may considerably reduce the genetic disease burden in Saudi Arabia in the next decades.

Frequency of haemoglobinopathies at premarital health screening in Dohuk, Iraq: implications for a regional prevention programme.

beta-thalassaemia major and sickle-cell disease are important health problems in Iraq. To provide information for a prevention programme, the frequency of haemoglobin disorders was mapped in Dohuk governorate. A total of 591 couples (1182 individuals) attending health centres for premarital health screening were tested; 44 (3.7%) were found to be carriers of ,-thalassaemia, 14 (1.2%) of the sickle-cell gene and 1 (0.1%) of deltabeta3-thalassaemia. A total of 3 couples (i.e. 5/1000) were at risk of having a child with beta-thalassaemia major, and the estimated number of affected children with a major haemoglobinopathy was 39 per year. The findings stress the importance of a regional prevention programme for haemoglobinopathies based on premarital screening, counselling and prenatal diagnosis.

Should there be mandatory testing for HIV prior to marriage in India?

The National AIDS Prevention and Control Policy of the government of India states that testing for HIV infection should be voluntary in nature. But from time to time various state governments and the central government have announced their intent of introducing mandatory premarital testing. Though this intent has not yet been translated into action, we present our case against the adoption of such a policy by discussing various social and medical issues. These include the limited population that such a policy would target given the early age of marriage in India; issues related to its implementation considering the low marriage registration rates in India; potential of stigma and discrimination associated with it; issues with defining boundaries and the role of the state; limitations related to the HIV test itself in context of the policy, including the window period and the positive predictive value of the test; its limited impact in population groups at a high risk for HIV infection; its limited role in changing unsafe behaviours; its limited potential to enhance the empowerment of women; its conflict with existing human rights; and the adverse experience of other countries with a similar policy.

Premarital screening for beta-thalassaemia in Southern Iran: options for improving the programme.

BACKGROUND: beta-thalassaemia is a preventable disease. Iran has about 20,000 homozygote beta-thalassaemia patients and 3,750,000 carriers. OBJECTIVE: To assess the 10-year results of the screening programme, which has been operating in Southern Iran since 1995. METHODS: All couples wanting to marry were required to be checked for beta-thalassaemia by their red blood cell indices in order to receive a permit for marriage registration. The results were reported to the nearest counselling team. If the results were conspicuous, haemoglobin A(2)(HbA(2)) and, in some subjects, Hb electrophoresis was performed. Couples in which both partners were carriers received counselling. For those who, in spite of the recommendation, decided to marry, prenatal diagnosis and termination of pregnancy in case of an affected fetus was offered. The latter was offered only in the last three years. RESULTS: In 1995, 1999 and 2004, 296, 94 and 56 beta-thalassaemia homozygotes, respectively, were born (2.53, 1.07 and 0.82 patients per 1000 births). DISCUSSION: This programme has decreased the birth prevalence of beta-thalassaemia, but has unfortunately not eliminated the disease altogether. The reasons for the birth of new cases, in spite of the screening programmes, are: (i) premarital screening programme started in 1995; therefore, carrier couples who married before this did not receive counselling and gave birth to homozygote beta-thalassaemia children; (ii) unwanted pregnancy among the carrier couples; (iii) the couples knew about their problem, but they married for cultural and religious causes (illegal marriages).