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.

Knowledge and Perception of and Attitude toward a Premarital Screening Program in Qatar: A Cross-Sectional Study.

Premarital screening (PMS) is a primary preventive measure to decrease the incidence of certain genetic disorders and sexually transmitted diseases. This study aimed to explore the knowledge and perception of and the attitude toward PMS and predictors of knowledge and attitude. A cross-sectional study was conducted among Qatar University students using an online survey. Multivariable regression analyses were used to identify factors associated with PMS knowledge and attitude. A total of 476 students participated in the study; 424 (89.1%) were females; two-thirds were 18-21 years old. Only 100 participants had heard about PMS. Knowledge of PMS was significantly associated with females, students enrolled in a health-related college, and non-consanguineous marriage of a participant's parents. The majority of the participants agreed that genetic diseases are psychological and economic burdens. For attitude, only 178 participants were willing to cancel marriages, given incompatible PMS results. The following factors were positively associated with attitude: PMS knowledge, enrollment in a health-related college, and the belief that PMS does not interfere with destiny. Our study findings revealed that despite the mandatory PMS in Qatar, the study participants, future couples, had low knowledge about the program. Therefore, strategies to increase awareness of PMS should be considered toward improving its outcomes.

Awareness and Attitude Towards the Premarital Screening Programme Among High School Students in Muscat, Oman.

OBJECTIVES: This study aimed to explore high school students' awareness and attitude towards premarital screening (PMS). METHODS: This cross-sectional study was conducted in 10 public high schools in Muscat, Oman from May to July 2016. A three-part self-administered questionnaire was used to collect data from grade 12 students. The first part focused on respondents' sociodemographic characteristics, while the second part dealt with awareness of the national PMS programme and the third part explored attitudes towards the national PMS programme. RESULTS: A total of 1,541 participants (response rate: 91.1%) completed the questionnaire. Most participants (78.1%) were aware of the availability of the PMS programme and their main source of information was family and friends (34.3%). The majority of students (87.4%) believed that PMS is important and most students (87.2%) indicated that they would undergo PMS. Over half of the students (55.3%) agreed that PMS should be mandatory before marriage and approximately one-third (38.3%) were in favour of having laws and regulations to prevent consanguineous marriages. Females were significantly more in favour of making PMS mandatory (P = 0.002) and enforcing PMS laws (P = 0.010) compared to males. CONCLUSION: Most respondents had good levels of knowledge about the PMS programme and half thought it is important to be tested. However, some students were not in favour of PMS. Increasing awareness about Oman's PMS programme is important and motivating students could contribute significantly to increasing the utilisation of the PMS programme and to limiting genetic blood disorders.

Premarital HIV testing in Malaysia: a qualitative exploratory study on the views of major stakeholders involved in HIV prevention.

BACKGROUND: HIV screening has existed in numerous methods as an important part of HIV prevention efforts over the years. Premarital HIV testing for couples who wish to marry has been implemented in a number of regions, which often operate in a mandatory rather than voluntary basis and is considered a contentious issue, with viewpoints held in favour and against. One such region is Malaysia which has a policy of mandatory premarital HIV testing of prospective Muslim married couples. The purpose of this study is to understand stakeholders' views on premarital HIV testing given the Malaysian Islamic context. METHODS: 35 in-depth face to face semi-structured interviews were undertaken with key stakeholder groups involved in HIV prevention policy in Malaysia, namely, officials from the Ministry of Health, religious leaders and people living with HIV. Participants were recruited from the Klang Valley area, from July to December 2013, using purposive sampling techniques. Inclusion criteria necessitated that participants were over the age of 18 and provided full consent. Interviews were audiotaped, followed a standardised topic guide, transcribed verbatim and analysed using a framework analysis. RESULTS: Participants identified pre-marital HIV testing as an effective HIV prevention policy implemented in Malaysia and was viewed, for the most part, as a positive initiative across all stakeholders. Religious leaders were supportive of testing as it provides a protective mechanism, in line with the teachings of the Shariah, while Ministry of Health officials considered it a normal part of their HIV prevention screening initiatives. However, there were concerns surrounding issues such as confidentiality, counselling and discrimination surrounding the test described by the PLHIV group. CONCLUSION: The findings of this study show that among the participants interviewed was strong support for mandatory premarital HIV testing, which could possibly expose the vulnerability to HIV, reluctance to test and other areas in the HIV response in Malaysia that need to be addressed. Furthermore, although international health organisations are vehemently against mandatory premarital HIV testing, the strong local support for such measures and the mismatch between these views is worth exploring in more detail, given the cultural, social and religious context.

University Students' knowledge, attitudes, and practices towards the National Premarital Screening Program of Saudi Arabia.

BACKGROUND: There is an elevated rate of hereditary hemoglobinopathies in Arab populations. To address this, the Saudi government has implemented a mandatory premarital screening (PMS) program. Nevertheless, reports have shown that 48% of genetically incompatible partners have decided to marry. To address this, more information is needed on people's beliefs on these issues. AIM: To investigate the knowledge, attitudes, and practices of Taif University students towards the national PMS program. MATERIALS AND METHODS: Using a questionnaire, a cross-sectional study was conducted during April-May 2016 on a random sample of university students in Taif City. It was administered electronically and primarily distributed through social media. RESULTS: Most participants (97.4%) were aware that genes may transmit hereditary diseases and had heard about the PMS program. Most participants who partook in the PMS justified it based on preventing disease transmission to their offspring and ensuring their partner's health. A fair number (82.9%) were willing to change their decision to marry in the case of receiving incompatible results. Moreover, the majority of the participants (91.8%) demanded the implementation of a law that prohibits incompatible marriages. CONCLUSION: Most Taif University students have a generally positive attitude and good intended practices toward PMS. However, targeted educational programs about the importance of PMS are strongly recommended to eliminate all factors that may affect the success of the PMS program.

Levels of satisfaction and factors influencing satisfaction for medical premarital examinations in Hubei, Middle China.

BACKGROUND: When the mandatory premarital examination requirement in China was cancelled in 2003, the rate of participation dropped sharply. This study examined the levels of exam satisfaction and the factors influencing satisfaction in the Hubei Province. METHODS: Graduate students administered 650 questionnaires, and 633 questionnaires were returned. Regression analysis was used to analyze satisfaction. RESULTS: The study found high levels of satisfaction, even though the exam participation rate was only 34.8%. A regression model for satisfaction showed that the most important objective factors were female sex (P < .05), specific city (P < .05), and level of education (P < .01); 2 important subjective variables were the level of understanding of the premarital examination (P < .01) and satisfaction with medical services of the premarital examination (P < .01). CONCLUSIONS: Satisfaction with the premarital examination might be increased by efforts to increase the level of understanding of the premarital examination and to improve medical services.

Factors influencing the decision to participate in medical premarital examinations in Hubei Province, Mid-China.

BACKGROUND: To investigate the attitudes of premarital couples towards the premarital screening program after the abolition of compulsory screening in China and to study the factors influencing participation. METHODS: Between July 1st 2010 to August 31st 2010, 650 people who registered for marriage at the civil affairs bureau of Wuhan, Suizhou, Zaoyang in Hubei province were studied using questionnaires. Logistic regression was used to examine the factors influencing participation in the premarital screening program. RESULTS: The premarital screening rate was 34.8% (95% Confidence Interval: 31.0% to 38.5%). Several demographic factors (age, residence, profession), awareness, knowledge, and attitudes towards premarital screening all had significant influence on participation in the premarital screening program. CONCLUSIONS: Promotion activities and health education to improve knowledge and attitudes to premarital screening will help increase the rate of voluntary premarital screening.

Attitude towards mandatory pre-marital HIV testing among unmarried youths in Ibadan northwest local government area, Nigeria.

This study assessed the attitude of unmarried youths towards Mandatory Premarital HIV Testing (MPHT) in Ibadan Northwest Local Government Area. A three-stage sampling technique was used to select 571 unmarried youths from households. A validated questionnaire was used for the collection of the data. Descriptive, Chi-square statistics and logistics regression were used to analyze the data. Mean age of respondents was 20.6 +/- 2.6 years, 52.0% were males and 52.7% had completed their senior secondary education. Though 82.8% believed that MPHT could reduce the spread of HIV, 43.8% stated that it will increase the stigma associated with HIV infection. Attitude towards mandatory pre-marital HIV testing however was positive. Males were about two times more likely to have positive attitude towards mandatory pre-marital HIV testing (OR = 1.507, CI = 1.067-2.129). Positive attitude towards MPHT among study respondents offers a window of opportunity of undergoing HIV testing before marriage.

Attitudes towards mandatory national premarital screening for hereditary hemolytic disorders.

BACKGROUND: A compulsory national premarital screening (PMS) program for hereditary hemoglobinopathies was established in the Kingdom of Saudi Arabia (KSA) in February 2004. Termination of pregnancy of affected fetuses is not widely acceptable. Many couples decide to get married regardless of the result. A trend towards coercive interference with this decision is emerging. OBJECTIVES: To examine the attitude of young educated individuals regarding the national PMS program and its implementation. METHODS: Eight hundred university students (aged 18-29) filled in a self-administered structured questionnaire. Data were analyzed using the EPI Info Statistical Package version 6. A P-value <0.05 was considered significant. RESULTS: Most students favor the PMS program but there were concerns regarding mandating the testing and interference with individual decision making. Significantly more women favored testing and coercive interference with the decision to marry. CONCLUSIONS: Further public education and wide spread genetic counseling prior to testing is essential for the success of the program. Screening singles on admission to university prior to any commitment may be preferable than screening immediately before the marriage certificate is issued.

Young Syrian adults' knowledge, perceptions and attitudes to premarital testing.

BACKGROUND: The issue of premarital testing is a controversial and complex issue. Syria is an Islamic country that is moving towards modernization that involves changes in social structures and urbanization of attitudes, beliefs, views and values. PURPOSE: The purpose of this study was to identify young Syrian adults' knowledge, perceptions and attitudes about premarital testing. METHODS: Descriptive, cross-sectional design was utilized. The study was conducted at a mid-sized university in Syria. A stratified simple random sampling was used to recruit the university students in the last 2 years of their graduation. A total of 942 students participated in the study using a questionnaire developed to measure the participants' knowledge, attitudes and perception of premarital testing. RESULTS: Although university students had a considerable knowledge of premarital testing, they had a limited knowledge about certain aspects. Moreover, although they had some positive attitudes, they still had negative attitudes and perceptions towards other aspects of premarital testing. CONCLUSION AND IMPLICATION: The study results could assist in the development of health education programmes in Syria and other Arab countries to increase their awareness and influence their attitudes towards premarital testing. The study limitation was that the sample was chosen from one part of Syria.

Knowledge and attitude toward the hemoglobinopathies premarital screening program in Saudi Arabia: population-based survey.

Genetic screening is an important tool to control, minimize, and prevent genetic disorders. Saudi Arabia started the first national premarital screening (PMS) program to control inherited hemoglobin (Hb) disorders that are the most commonly inherited genetic disorders in the Kingdom of Saudi Arabia. The aim of this study was to assess the knowledge, perception, and attitude among the Saudi population about the PMS program through a questionnaire-based survey. A total of 1,047 candidates were included, divided into three groups. Group A represented the general population, group B was composed of couples presenting for PMS, and group C represented couples who had received their results. There was a fair knowledge among participants of the three groups about the nature of the tests and the targeted disorders, with more than 80% believing that it should include both sexually and genetically transmitted diseases. The concept of genetic counseling was liked by most of the participants. There was a positive attitude toward the program and the majority agreed to apply the PMS program to all couples in all country regions. More than 60% of all the participants were in favor of preventing at-risk marriages.

Knowledge regarding the national premarital screening program among university students in western Saudi Arabia.

OBJECTIVE: To explore the knowledge of university students in Jeddah, western Saudi Arabia, regarding the national premarital screening (PMS) program. METHODS: A self-administered questionnaire was distributed to a sample of 800 students at King Abdulaziz University (KAU), Jeddah, Kingdom of Saudi Arabia during the first semester of the academic year 2005--2006. This included questions regarding socio-demographic data, personal history of hereditary disease, or premarital screening, knowledge on hereditary diseases, and on the national PMS program. Data were analyzed using the Statistical Package for Social Sciences version 13. A p-value less than 0.05 was considered significant. RESULTS: Eighty-five percent of the students believed that gene mutations may lead to hereditary disorders, and 84% of the respondents believed that consanguinity can increase the risk for genetic diseases. Fifty-six percent were aware that hereditary disease could affect any body system. Less than one-third of the students knew which disorders are tested for by the PMS, and 54% of the students thought that PMS detects all hereditary diseases. Only 35% knew what a non-compatible test result meant, while 59% believed that a compatible result meant freedom from all hereditary diseases. CONCLUSION: Most of the students at KAU have good general knowledge concerning hereditary diseases, but had inadequate knowledge in relation to the national PMS program. The majority did not know which diseases were tested for, and what the test result meant. Public education regarding the disorders tested for, and the implication of screening is essential for the success of the premarital program.

Attitudes towards premarital screening for hepatitis B virus infection in Iran.

OBJECTIVE: To evaluate the attitudes of the young adult population towards premarital screening for hepatitis B virus (HBV). METHODS: Premarital counselling for reproductive health and testing for thalassaemia is required for couples wishing to be married in Iran. We added an information session about hepatitis B to the routine counselling programme, and then evaluated the attitudes of the enrolled population towards premarital screening for hepatitis B, through a self-administered questionnaire. RESULTS: From a total of 1342 participants, 1316 individuals returned the questionnaires (response rate: 98.1%). In total, 73.2% of participants were in agreement with HBV screening. Male sex and higher level of education were associated with more positive attitudes towards HBV testing. CONCLUSION: Conducting a universal premarital HBV screening programme would be highly acceptable in Iran.

Culturally sensitive adaptation of PREPARE with Japanese premarital couples.

In this study, we attempted to achieve a culturally sensitive adaptation of the PREmarital Personal And Relationship Evaluation (PREPARE) Inventory with Japanese premarital couples (n = 849). A translation, back-translation, and construct modification process was initiated by a group of U.S. and Japanese researchers to ensure a culturally sensitive and applicable adaptation of PREPARE. Alpha reliability analyses revealed good internal consistency among Japanese PREPARE scales. A Japanese premarital couple typology was developed using cluster analyses. Several unique features of the Japanese premarital types are identified and discussed. Suggestions are provided for continued enhancement in adaptation process of PREPARE with Japanese premarital couples.

Attitudes towards premarital testing on human immunodeficiency virus infection among Malawians.

AIM: To determine factors influencing voluntary counseling and premarital testing on human immunodeficiency virus (HIV) in Malawi. METHOD: We analyzed the data collected by the Malawi Demographic and Health Survey (MDHS) 2000 to determine the likelihood of Malawi population to accept HIV testing. The MDHS was a nationwide cross-sectional study where cluster sampling technique and an interviewer-administered questionnaire were used. We applied the Logit model of analysis to determine the HIV testing likelihood according to the following parameters: age, place of residence (urban vs. rural), belief that sexual abstinence protects from HIV infection, knowledge of a location of HIV testing, belief that diagnosis of HIV should be kept secret, and knowledge of anyone with AIDS. RESULTS: Out of 3,092 participants, 23.3% lived in urban and 76.7% in rural areas. Willingness to have premarital HIV counseling and testing was positively associated with increased age, urban residence, and wish to keep one's own HIV testing result confidential. However, knowledge of a person with HIV/AIDS, HIV testing location, and other sexually transmitted infections/diseases, as well as belief that abstinence protects against HIV were inversely related to desire to take an HIV test. CONCLUSION: Not all population groups have an equal likelihood of accepting voluntary HIV counseling and testing. Public health intervention on HIV counseling and testing should be tailored specifically for each population group.

A review of three comprehensive premarital assessment questionnaires.

Three comprehensive premarital assessment questionnaires (PAQs) are described, evaluated on their psychometric characteristics, and compared. They include the PREmarital Preparation and Relationship Enhancement (PREPARE) questionnaire, the Facilitating Open Couple Communication, Understanding and Study (FOCCUS) questionnaire, and the RELATionship Evaluation (RELATE). Recommendations for using each PAQ are discussed.

Premarital genetic investigations: effect of genetic counselling.

Over a period of 2 years, 86 couples (172 cases) were referred to the genetics clinic of the National Research Centre for premarital genetic counselling. About 73.25% had a family history of different genetic disorders. Consanguinity was found in 86.04%. Genetic investigations revealed chromosomal abnormalities in 26 cases (15.11%); 23 cases (13.37%) had other abnormal results. After genetic counselling, postconceptional follow-up was carried out for 30 couples; 10 of them required amniocentesis that showed abnormal fetuses in 2 mothers. Other couples had normal offspring. We conclude that premarital genetic counselling is of great use in the detection of genetic disorders and is an essential step in changing attitudes towards premarital testing and reducing consanguineous marriage.

Eugenics is alive and well: a survey of genetic professionals around the world.

A survey of 2901 genetics professionals in 36 nations suggests that eugenic thought underlies their perceptions of the goals of genetics and that directiveness in counseling after prenatal diagnosis leads to individual decisions based on pessimistically biased information, especially in developing nations of Asia and Eastern Europe. The "non-directive counseling" found in English-speaking nations is an aberration from the rest of the world. Most geneticists, except in China, rejected government involvement in premarital testing or sterilization, but most also held a pessimistic view of persons with genetic disabilities. Individual, but not state-coerced, eugenics survives in much modern genetic practice.

[The analysis of motivation and attitude of premarital medical examinees].

The study aims to analyse the motivation and attitude of premarital medical examinees. Ninety-two premarital medical examines, which include 46 self-paid persons and 46 government paid (subsidized by the Department of Health) visited the Family Clinic. They were studied from Oct. 27, 1988 to Nov. 8, 1989. Among 48 male and 44 female examinees, the sex ratio (male:female) was 1.09:1. The predominant age distribution was 26-30 y/o (58.2%); and the predominant level of education was college (54.4%). Questionnaires were sent to these premarital medical examinees. We received 70 questionnaires-47.1% from self-paid, and 52.9% from government paid. The recovery rate was 76.1%. The results of analysis were: 1) Concerning the motivation of examination, 35.1% of self-paid were introduced by relatives or friends; while 50% of government paid were introduced by newspapers; 41.2% of the total response were afraid of genetic disease. 2) Concerning the opinion of the examination fee, there were no significant differences between those of self-paid and government paid.