Pre-Marital Screening and Genetic Counseling: Knowledge, Awareness, and Perception among Bangladeshs Population
Premarital screening tests couples for genetic disorders (e.g., sickle cell anemia and thalassemia), as well as infectious diseases (e.g., hepatitis B, hepatitis C, and HIV/AIDS), while genetic counseling offers information and support on genetic conditions. This study addresses the significant lack of data on public awareness and understanding of pre-marital screening and genetic counseling (PMSGC) in Bangladesh, contrasting with countries like Saudi Arabia where PMSGC is mandatory. To bridge this knowledge gap, a cross-sectional survey was conducted from May to September 2023, involving 638 participants of various age groups and educational levels. Despite all participants being familiar with PMSGC, only 33% demonstrated adequate understanding, with higher knowledge levels linked to better education and positive medical history. While participants recognized the importance of PMSGC, there was a clear disconnect between their perceived significance and awareness of associated risks. Notably, 71.6% emphasized the urgent need for improved public awareness. The findings suggest that targeted educational campaigns and enhanced counseling services focusing on genetics, chronic diseases, mental health, and reproductive health are essential for improving PMSGC awareness and effectiveness in Bangladesh.
The premarital screening and genetic counselling (PMSGC) program is a main preventive measure that comprises promoting a womens and her partners health and wellbeing prior to conception (Tawfik et al., 2011), (N. K. R. Ibrahim et al., 2011), (Alswaidi & OBrien, 2009). This program includes a general medical assessment and premarital health counselling (Tawfik et al., 2011). Pre-marital screening entails the evaluation of prospective partners for transmissible illnesses such as hepatitis B, hepatitis C, HIV/AIDS, as well as common hereditary blood disorders such sickle cell anemia and thalassemia. Pre-marital screening assists engaged couples in identifying potential health issues and dangers for both couple and their future child (More, 2021), (Tawfik et al., 2011). Genetic counseling is seen as a crucial component of treating Patients and their families who have been identified as having a genetic condition or who are at risk of developing one. It gives patients the required knowledge about their genetic profile and illness. Additionally, it determines the likelihood that a genetic condition will run in their family and helps, a diagnosis, management, and-if available-treatment (Banerjee & Bhattacharjee, 2022; Uddin et al., 2022).
The primary focus of most counselling sessions is on hemoglobinopathies, including sickle cell anemia and thalassemia. Public health difficulties associated to these disorders are prevalent in the Mediterranean region, the Middle East, the Indian subcontinent (including Bangladesh), South-east Asia, tropical Africa, and the Caribbean. According to the World Health Organization (WHO), around 250 million individuals have a heterozygous genotype for inherited hemoglobinopathies, including sickle cell anemia and thalassemia (Boyo et al., 1982). Hemoglobinopathy is highly prevalent in South Asia (Pakistan, India, Sri Lanka, and Bangladesh), which represents 23% of the worlds population (or around 1.56 billion people) (Black et al., 2010). With a population of more than 160 million, Bangladesh is a country in South Asia. In this nation, the thalassemia gene is carried by 10–19 million persons (6–12% of the population) (Hossain et al., 2020). It is estimated that around 7,000 infants are born with thalassemia in Bangladesh each year (Bhuiyan et al., 2012).
Since 1972, Bangladesh has improved in various health-related areas, including as infant mortality, life expectancy, and access to healthcare, but we are still far behind many other nations, notably our neighbor India, in the provision of genetic services. According to data from developed nations, major genetic illness or birth abnormalities, which may impact 3% of all births, are responsible for up to 30% of pediatric hospital admissions and 50% of child fatalities. Additionally, less than 20% of single-gene illnesses and less than 5% of congenital and genetic diseases are caused by recessively inherited disorders. On the other hand, a considerable proportion of prenatal and neonatal deaths worldwide are caused by genetic and congenital illnesses (Alwan & Modell, 1997).
Bangladesh has improved in various Several Mediter-ranean and Islamic countries, such as Cyprus, Iran, Saudi Arabia, the United Arab Emirates, Bahrain, Jordan, Qatar, and Palestine, enforce laws that mandate premarital screening programs for the entire population before issuing marriage certificates to couples. In this country, prospective spouses must submit to blood tests to check for the presence of sickle cell anemia and thalassemia, two genetic blood illnesses. or a deficit of glucose-6-phosphate dehydrogenase (G6PD) (Al-Farsi OA et al., 2014). The way of screening programs is implemented varies from nation to nation. They are developed in accordance with the frequency of genetic diseases in each country and the accessibility of reliable tests that enable a high rate of detection (Al-Farsi OA et al., 2014), (Al Sulaiman et al., 2008), (Alswaidi & OBrien, 2009), (Bener & Alali, 2006), (Adibi et al., 2010), (Gilani et al., 2007), (AlHamdan et al., 2007). But there is no legal outline for genetic counseling and preventative interventions in Bangladesh. The penal law from 1860, which still governs the nation, makes abortion severely prohibited unless the womans life is in risk. In response to a genetic diagnosis, there are no suggestions for career screening and preventative measures (GUTTMACHER, 2019).
While hemoglobinopathy is common in Bangladesh, there is insufficient data about its prevalence, how it progresses clinically, mortality rates, associated health conditions, and outcomes of treatments. The overall population of Bangladesh has insignificant knowledge of the disease. This lack of information is influenced by regional and population characteristics, including gender, marital status, education, employment position, and socioeconomic status (Abu-Shaheen et al., 2020). In addition, Bangladesh lacks a comprehensive health insurance system and a coordinated national program for premarital screening (Hossain et al., 2020). Therefore, this study aimed to assess public knowledge, perception and attitude toward premarital screening and genetic counseling.
Study design
From May to September 2023, 638 randomly chosen responses were gathered from men and women of various ages and marital statuses from universities in Bangladesh, both public and private, with undergraduate, graduate, college, PhD, and MPhil students in a variety of fields including medicine and health science, life science, the humanities, physical science, engineering, and business studies, among others. The survey was designed as a cross-sectional, descriptive online survey. Participants who used social media (Facebook, Instagram, WhatsApp, Gmail, and so on) were included and filled out this form; some of them conducted this survey through observation, and group discussions, etc. Incomplete questionnaires and individuals who declined the opportunity to take part in the research were both disqualified. Participants were not provided any rewards or other forms of compensation, and their participation was completely voluntary and anonymous.
Questionnaire content
Data was collected via a structured questionnaire, which was developed by this research team based on an extensive review of the literature (Roy, 2016), (Weatherall & Clegg, 2001), (Wendt et al., 2023), (More, 2021), (Tawfik et al., 2011). The survey questionnaire was created in English and then tested with 10 participants who matched the studys criteria before the actual data collection took place. Along with the questionnaire, there was also a brief explanation of the researchs history, objectives, and methodologies, as well as an eligibility statement, a confidentiality statement, enrolment criteria, and an online consent form. After that, participants were given structured surveys to complete, which contained demographic inquiries.
The questionnaire consisted of 34 questions, categorized into four sections: i) demographics (7 items), ii) understanding of pre-marital screening and genetic counseling (5 items), iii) attitudes (14 items), and iv) recognition and views on pre-marital screening and genetic counseling (8 items). The surveys instructions section presented essential definitions of personalized medicine and pharmaco-genomics/pharmacogenetics tests to the participants. The survey incorporated questions with response options of yes, no, or I dont know (not sure). Additionally, the survey featured multiple-choice questions and a Likert scale to gauge agreement with various statements (including options such as agree, disagree, no opinion, and neutral). An introductory cover page was included, outlining the studys purpose and objectives and inviting students to participate. Categorical variables were described using frequencies and percentages. Socio-demographic characteristics (e.g., age, gender, marital status, label of education) had been considered independent variables, while knowledge and attitude towards premarital screening and genetic testing had been considered outcome variables.
Statistical analysis
All categorical variables were presented as frequencies and percentages, including participant demographics, professional information, and responses to questions about participants opinions about genetic testing. SPSS software version 26 (SPSS Inc., Chicago, IL) and Microsoft Excel were used for the data analysis. Using descriptive statistics, proportions were calculated. The knowledge, awareness, attitude and perception of genetic testing for hereditary disorder survey responses were compared to these attributes using the Chi-square test. The p values were determined by chi-square analysis. All statistical tests were performed with a significance threshold of 5%, and the odds ratio (OR) and correspondence 95% confidence intervals (CI) were computed.
There were 638 respondents, among them 272 (42.6%) were female, and 366 (57.4%) were male. Among them, 25.4% and 24.9% were married, respectively.
Table 1: The sociodemographic characters of studied participants by gender.
The majority of respondents had a higher secondary school and university educational level (84.3). Most of them are life science (26.2%), engineering (16.9%), and medicine and health science (14.3%). About two-thirds of respondents (74.1%) had a monthly family income of <50000 TK. The sociodemographic features of the studied participants are presented in Table 1.
Fig. 1: Source of knowledge about pre-marital screening and genetic counseling of respondents
All research participants were familiar with PMSGC. The source of the participants program knowledge is shown in Fig. 1. Most participants named the Internet and other online resources as their primary information sources.
Fig. 2: Knowledge of pre-marital screening and genetic counseling of respondents.
Only 33% of the 638 participants had a good understanding of PMSGC, 36% had moderate awareness, and 31% had poor information (Fig. 2). Pre-marital screening (PMS) knowledge was more likely to be adequate among men (34.7%) than among women (30.9%). Table 3 depicts the participants perspectives on the PMSGC. According to the table, the vast majority of participants (67.1%, 72.6%, and 65%, respectively) strongly agreed with the significance of the PMSGC program, that the program will help to lower the prevalence of some genetic diseases and STDs, and the significance of increasing public awareness of the PMSGC prior to marriage. About two-thirds of participants (66%) strongly concurred that the decision to get married after learning about an STD or genetic condition must be left up to the couple. The idea that the PMSGC breaks Islamic law was rejected or severely rejected by some participants (32.4%), while it was firmly supported by 23.5% of them.
Table 2: Relationship between knowledge level about pre-marital screening and genetic counseling, socio-demographic characteristics of respondents.
Table 2 depicts the relationship between participants knowledge regarding the PMSGC. The data clearly show that a greater percentage (33.8%) of individuals under the age of 30 had appropriate knowledge.
Table 4 provides a comprehensive insight into the awareness and perceptions surrounding premarital screening and genetic counseling (PMSGC) in Bangladesh. Notably, a significant majority of respondents, a whopping 81.5%, expressed their belief in the overall benefits of PMSGC for the population of Bangladesh. This positive sentiment towards genetic counseling was further emphasized by the fact that 79.9% of respondents recognized the importance of genetic counseling for premarital couples.
Table 3: Attitude of respondents towards pre-marital screening and genetic counseling.
Interestingly, the survey discovered that a substantial portion of the participants, approximately 71.6%, felt that there was a pressing need for greater awareness about PMSGC in Bangladesh. On the other hand, when it comes to awareness of associated risks, the data showed a contrasting picture.
Fig. 3: Family history of genetic disorder of respondents.
Only 48.7% of respondents were aware of the potential risks linked to premarital screening and genetic counseling.
Table 4: Awareness and perception of pre-marital screening and genetic counseling.
Despite the varying levels of awareness and knowledge, it is noteworthy that a substantial 68.7% of respondents expressed the opinion that PMSGC should be made mandatory for couples before marriage.
Pre-marital screening is becoming more and more recognized as a crucial public health intervention in many countries (Meyer, 2005), (Oluwole et al., 2010), (Al Arrayed & Al Hajeri, 2009), (Alkalbani et al., 2022). The nature of a screening program is heavily determined by the period of life at which it is made available. Genetic testing programs are carried out all around the world, either before or after birth, or in teenagers and adults before conception, but not when they are thinking about getting married and having children (Bener & Hussain, 2006), (Bener et al., 2007), (Melaibari et al., 2017), (Mm et al., 2014), (Adibi et al., 2010), (Alkalbani et al., 2022), (Sheikh et al., 2017), (Gilani et al., 2007). PMS is an important tool for newlyweds to learn about reproductive health and decide marriage (Al-Shafai et al., 2022). By limiting the number of high-risk couples, pre-marital screening has the potential to lessen the burden of hereditary hemoglobin disorders (N. K. R. Ibrahim et al., 2011), (Alswaidi & OBrien, 2009).
Pre-marital infectious illness screening is also a large-scale, ambitious endeavor in terms of both expense and impact. The latest research indicates that the internet and online platforms were identified as the primary sources of knowledge for PMSGC. This was closely followed by friends and family, periodicals, and newspapers. These findings align with previous studies on pre-marital counselling among unmarried university girls in Jeddah (N. K. R. Ibrahim et al., 2011). Other studies have revealed that radio and television (Amany & Al-Haddad, 2018), school (Adeyemo et al., 2022) were the most usual source of knowledge. Online and media sources thus play a significant role in educating the public about the PMSGC initiative. This study examined a sample of the Bangladeshi population to assess their knowledge, attitudes, and behaviors regarding PMSGC. Additionally, the study investigated the relationship between these factors and sociodemographic characteristics such as age, gender, marital status, and educational attainment. Only 211 (33%) of the 638 participants in the research had a sufficient understanding of PMSGC and the relevant screening for genetic and infectious disease, despite the fact that everyone had heard of PMSGC. This finding is comparable to one from Oman and Saudi Arabia research in which, despite the fact that most individuals had heard of PMSGC, only half were aware of pre-marital testing (Al-Farsi et al., 2014), (Al-Shroby et al., 2021).
The participants, mostly females, were not aware of PMSGC program. In contrast, a study done in Saudi Arabia by AI Sulaiman et al. (Al Sulaiman et al., 2008) found that the participants had good knowledge about the nature of the test. Another research examined the population of Al-Madinahs understanding of the PMS program and discovered that 50% were not aware of the illnesses being tested (AlQahtani et al., 2018). Additionally, our study revealed another alarming finding: the influence of consanguineous marriages on the prevalence of genetic diseases was not known to half of the respondents. This finding was consistent with a study conducted in Bangladesh (Alam et al., 2022) but inconsistent with a prior study in Pakistan (Maheen et al., 2015).
This knowledge gap among participants demonstrates the need for more work to raise public awareness of the PMSGC program using various strategies. According to the present study, education is the primary factor that predicts having PMSGC knowledge score. This finding is in line with a prior study that revealed those with a university degree or higher have better knowledge (Alam et al., 2022), (Tawfik et al., 2011), (Al-Gazali, 2005). Another significant discovery was that participants who had previously undergone PMSGC had a higher level of knowledge compared to those who had not. This may be attributed to the heightened awareness among individuals who suffer from these illnesses, regarding their implications and potential repercussions. The latest study revealed that the majority of individuals exhibited a favorable disposition towards recognizing the significance of PMSGC, aligning with the conclusions drawn from many prior studies (Suresh et al., 2023), (Alam et al., 2022), (Al-Kahtani, 2000), (Balck et al., 2009). The general public in Riyadh responded favorable to the program in a 2008 research, and the majority of respondents supported the nation of implementing the PMSGC program for all couples across the nation (Al Sulaiman et al., 2008). In 2002, a poll conducted in Abha revealed that 70% of university students participated in the PMSGC program (Al-Khaldi et al., 2002). According to a study of 800 university students in Jeddah, the majority of them support the program, however there are some issues with the testing requirement and interference with personal choice (Al-Aama, 2010). A research done in Iran to assess young adult opinions about premarital HBV screening discovered that 73.2% of participants agreed with HBV screening (Adibi et al., 2010). Another investigation was made in Nigeria, where the evaluation of the participants attitudes revealed that they had favorable opinions on the requirement for premarital HIV testing (Arulogun & Adefioye, 2010). Results from Germany in 2009 revealed that respondents aged 14 to 95 had a generally favorable attitude toward genetic testing (Balck et al., 2009).
Few of the participants in the current study (23.5%) misunderstood the PMSGC from a religious perspective. Al-Khaldi et al. also discovered that few Abha students displayed unfavorable attitudes brought on by misunderstandings about religion, and they concluded that the respondents may benefit from extensive religious health education (Al-Khaldi et al., 2002). The majority of participants in the current survey believed that the couple should make the marriage decision if it is determined that they are carriers of an inherited disease or if the condition is present. The conclusions of other investigations are supported by this finding (AlKhaldi et al., 2018), (Al Kindi et al., 2012), (Alkhaldi et al., 2016).
Most of the respondents to our study agreed that PMS will contribute to a reduction in the prevalence of some genetic and STDs. They also agreed that raising awareness about PMS would reduce genetic and STDs, which is similar to the study of Jeddah (N. K. Ibrahim et al., 2013). The presents study reveals a multifaceted perspective, which provides valuable insights into the potential implementation and promotion of PMSGC service in the country. One of the most noteworthy findings is the overwhelming belief in the benefits of PMSGC, with 81.5% of respondents expressing a positive statement. This indicates a strong acceptance of genetic counseling as a valuable healthcare service among the population. This positive perception is further underlined by the fact that 79.9% of participants recognized the importance of genetic counseling for premarital couples. These results align with the global trend of increasing acceptance of genetic counseling as a means to address hereditary disease and promote healthier families (Altaany et al., 2021), (Gharaibeh & Mater, 2009), (Zaki et al., 2020).
However, it is crucial to acknowledge a significant gap in awareness among respondents. Despite the high recognition of its importance, it is noteworthy that all of these individuals were not aware of the availability of PMSGC services. This increases concerns about the accessibility and dissemination of information regarding these vital services to the public. The data also revealed a pressing need for greater awareness about PMSGC in Bangladesh, as indicated by 71.6% of participants. This highlights the importance of public health campaigns and educational initiatives aimed at disseminating information about PMSGC. This result are similar to those previously reported in the Saudi population (Aljulifi et al., 2022). Bridging this awareness gap is imperative to ensure that individuals can make knowledgeable decisions regarding their reproductive health. Conversely, the study revealed a contrasting picture regarding awareness of associated risks. Only 48.7% of respondents were aware of the potential risks linked to premarital screening and genetic counselling. This finding underscores the need for more comprehensive education about both the benefits and limitations of PMSGC to facilitate informed decision-making among the population.
The appearance of genetic illness is quite high in Bangladesh, owing in part to the elevated level of consanguinity and prolonged exposure to different environmental contaminants. On the basis of all the information, it can be said that the general population has little knowledge about premarital screening and genetic counselling programs, which should be promoted through educational efforts in hospitals, universities, and schools. It is essential to offer genetic screening using advanced technology and counseling within government-regulated facilities to all couples planning to get married. However, they have a good attitude and a satisfying impression of the execution and significance of PMSGC. In order to teach the public about the positive effects of PMSGC on health, relevant and informative media companies, as well as government and non-government activities like seminars, workshops, etc. should be organized. For the broader Bangladeshi population to become knowledgeable and aware of PMS, a coordinated effort is imperative.
It would be simple to execute this program in our nation if everyone could improve general population awareness about PMSGC. Our study also discovers that there are several obstacles to using these services including ignorance, shame, and expense. The study suggests that more work needs to be done to promote these programs, lessen stigma, and increase their accessibility. However, its important to note that this study was conducted on a very small scale with a very small number of people. Therefore, it is recommended that a definitive conclusion and a more precise understanding of knowledge and awareness regarding PMSGC are sought, additionally, extensive research should be undertaken.
Data collection, analysis and manuscript writing have all been aided by the authors. M.M.I.: reviewed the manuscript and provide critical comments. The final manuscript was reviewed and approved by all authors.
The authors extend their heartfelt gratitude to the participants of this study. They would also like to express their appreciation to the esteemed faculty members of various universities who played a pivotal role in encouraging their students to take part in this research in Bangladesh.
Each author has confirmed that they have no competing interests.
Academic Editor
Dr. Phelipe Magalhães Duarte, Professor, Department of Veterinary, Faculty of Biological and Health Sciences, University of Cuiabá, Mato Grosso, Brazil.
Hasan SA, Shakil Ahmmed S, Goni MO, Tanha TH, Rahman US, Khan M, Anwar MDN, Akther P, Aktar M, Kibria M, Islam S, Dhar P, Tinny IJ, Nyun MT, Islam A, and Islam MM. (2024). Pre-Marital screening and genetic counseling: knowledge, awareness, and perception among Bangladeshi population. Am. J. Pure Appl. Sci., 6(6), 184-196. https://doi.org/10.34104/ajpab.024.01840196