Attitudes of parents with a child with autosomal recessive disease toward consanguinity | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Attitudes of parents with a child with autosomal recessive disease toward consanguinity Yagoub Al-Kandari, Shaker Bahzad, Dina Ramadan, Hind Alsharhan, and 2 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-3987895/v1 This work is licensed under a CC BY 4.0 License Status: Posted Version 1 posted You are reading this latest preprint version Abstract The major aim of this study is to examine the perspective and attitudes of parents with one or more affected children by an AR disease towards consanguineous marriages. A total of 285 parents were invited to participate in this study. The sample was divided into two groups: clinical sample including parents attending various clinics in hospitals and a community sample. A self-administered survey was developed by researchers. The questionnaire was about the subjects’ attitudes toward consanguinity and was divided into two parts: sociocultural and health attitudes. SPSS was used for data entry and analysis. Chi-square, t-test and Pearson correlation were the major statistical procedures. Significant differences were found between consanguineous parents with at least one affected child with an AR genetic disease and the community sample (non-consanguineous parents). Regarding the prevalence of consanguinity, support consanguinity in general, parents want their children to marry a relative and consanguinity is common in their family, significant differences were also found between clinical and community samples. Regarding health attitudes, significant differences between the two samples were found in six out of seven examined variables. A relationship between the rate of consanguinity and the respondent’s education level was found. High level of inbreeding with increasing consanguinity rates is responsible for the high prevalence of inherited AR genetic disorders in the MENA region with subsequent morbidity and mortality. Introduction Consanguineous marriage is widely practiced in Arab and Middle Eastern countries with highest rates compared to the rest of the world (1). The prevalence of consanguinity in the Middle East and North Africa (MENA) region is estimated to be around 25-60% favoring first cousin marriages resulting in abundance of autosomal recessive (AR) disorders in the region. The relationship between consanguinity, and the prevalence of (AR) diseases is well documented (1-7). Many Arab societies are still tribal with limited number of ancestors resulting in high burden of certain genetic disorders confined to such tribal groups or families (2). Despite the known risk of increased incidence of inherited AR disorders in general and the high prevalence of certain inherited genetic condition among particular tribes, endogamy and consanguineous marriages have been strongly favored and respected among individuals in the MENA region due to a number of socio-cultural factors. Such factors include maintenance of family structure and property, ease of marital arrangements, better relations with in-laws, lesser risk of hidden financial and health issues and the belief of promoting marriage stability (1). In the United Arab Emirates, despite the numerous obstacles that women confront, most participants continued to believe in the consanguineous marriage system (8). Data from Saudi Arabia indicated that consanguineous marriages are still common despite them knowing the increased risk of producing children with genetic disorders (9). In Kuwait, consanguinity is still preferred, according to two studies conducted in the last decade using data from the prior three decades despite known detrimental reproductive health consequences in the offspring (10-11). The earliest study showed that almost half of the married couples in Kuwait were consanguineous (11), and the most recent one showed a little decline but still indicated a high number of consanguinity at 46% (10). Some research studies recently reviewed the relationship between consanguinity and increased rate of certain inherited genetic disorders in Kuwait, which include mitochondrial diseases (12-13), inborn errors of immunity (14-15), classic homocystinuria, congenital malformations (16-17), primary ciliary dyskinesia (18), retinitis pigmentosa (19), and hyperoxaluria type 1 (20). The major aim of this study is to examine the perspective and attitudes of parents with one or more affected children by an AR disease towards consanguineous marriages. We included parents during their visits to various specialty clinics in Kuwait. Our study examined the impact of consanguineous marriage in the setting of medical and social aspects. To learn the attitudes of this sample group, their responses were compared with those of non-consanguineous married couples in the community. This study tried to answer the following questions: What are the differences between the clinical and community samples regarding sociocultural and health attitudes toward consanguinidiseases.spondents’ age at marriage, number of children, number of children who have the same diseases in the family, and number of children’s deaths caused by genetic diseases? What is the relationship between the rate of consanguinity in the respondents’ families and some social and health variables? Methods Subjects A total of 285 parents were invited to participate in this study. The sample was divided into two groups: clinical sample including parents attending various clinics in hospitals and a community sample. For the first group, a total of 150 consanguineous parents who attended outpatient clinics for either inborn errors of immunity, inborn errors of metabolism or hematologic diseases and had at least one child confirmed to have an AR disease were invited. Out of 150 subjects, 128 (85.3%) responded to the questionnaire (53 males [41.4%] and 75 females [58.6%]). The age range was 24–60-year-old (mean [M] = 39.71; standard deviation [SD] = 8.56). The other group included 154 respondents from outside the clinic (community) (49 males [31.8%] and 105 females [68.2%]). The age range was 30–73-year-old (M = 42.47; SD = 12.94). They were all married to non-relatives. The control group was selected from outside the clinic to achieve the study’s major aim. The aims of the study were explained for all subjects. The study was approved by the Research and Ethics Committee of the Ministry of Health in Kuwait and by the Kuwait University Health Sciences Center Ethical Committee Research. Informed consent was obtained from the participants for inclusion in the study. Variables A self-administered survey was developed by a clinical immunologist (WA), a medical anthropologist (YA), and a medical geneticist (SB). It included two major sections. The first section included demographic and personal data, such as sex, governorate, age, education level (six categories), family income (eight categories), year of marriage, age at marriage, and number of children. Also, the respondents were asked to determine the degree of consanguinity with their spouses. It was divided into nine categories: first cousins on the father’s brother’s side, father’s sister’s side, mother’s brother’s side, or mother’s sister’s side; double cousins through the father’s brother and the mother’s sister or the mother’s brother and the father’s sister; second cousins; third cousins; and non-consanguineous. The second section of the questionnaire was about the subjects’ attitudes toward consanguinity and was divided into two parts. Sociocultural attitudes : This section explored sociocultural attitudes toward consanguinity and collected six data points: the frequency of consanguineous marriage in the community (“common,” “uncommon,” or “do not know”), whether consanguinity is increasing in the society (“increasing,” “decreasing,” “no change,” or “do not know”), whether consanguinity decreases divorce in the society (“agree,” “disagree,” or “do not know”), whether participants supports consanguinity (“agree,” “disagree,” and “neutral”), how participants would react if their child decided to marry a relative (“encourage him or her,” “advise against,” or “does not affect the decision to allow the child to marry”), how common consanguinity was among participants’ families (“common,” “middle,” “uncommon,” or “do not know”), and whether it is important to discuss consanguinity before marriage (“agree,” “disagree,” or “do not know”). Health attitudes : This section examined health attitudes towards consanguinity and collected six data points: whether the participant thought the death of a child could be caused by genetic disease (“yes” or “no”), whether there is a relationship between consanguinity and abortion (“agree,” “disagree,” or “do not know”), whether consanguinity increases genetic defects in children (“agree,” “disagree,” or “do not know”), whether the participant’s child’s health problem was caused by (“consanguinity,” “unrelated to consanguinity,” or “do not know”), whether a 25% chance that the participant’s fetus would inherit a recessive disease is an acceptable possibility (“agree,” “disagree,” or “do not know”), whether the participant would consider prenatal testing if there were a chance of passing on a recessive disease (“yes,” “no,” or “do not know”), and whether the participant considered marriage pretests a good practice (“yes,” “no,” or “do not know”). Five colleagues in related fields reviewed the questionnaire for validity. The questionnaire was tested for reliability in a pilot study of 32 subjects during a two-week period. Statistical procedures Statistical Package for Social Sciences (Version 25) was used for data entry and analysis. Descriptive and inferential statistics were used. Chi-square test was used to examine the difference in percentages between the clinical and outside samples’ sociocultural and health attitudes toward consanguinity. Student t-test was used to examine the differences between clinical and outside respondents’ age at marriage, number of children, number of children who have the same diseases in the family, and number of children’s deaths caused by genetic diseases. Finally, the Pearson correlation test was used to examine the relationship between the rate of consanguinity in the respondents’ families and some social and health variables. Results Table 1 shows the frequencies and percentages of the degree of blood relation among respondents from the clinics. Table 1 The clinical respondents’ degrees of consanguinity Degree of consanguinity Freq. % Cum % 1st cousin (paternal uncle side) 27 21.1 21.1 1st cousin (paternal aunt side) 10 7.8 28.9 1st cousin (maternal uncle side) 20 15.8 44.5 1st cousin (maternal aunt side) 26 20.3 64.8 Double cousin (paternal uncle and maternal aunt side) 12 9.4 74.2 Double cousin (maternal uncle and paternal aunt side) 5 3.9 78.1 Second cousin 12 10.2 88.3 Third cousin 15 11.7 100 Table (1) here Data showed that most respondents were married to their first cousins (78.1%). It also showed that 64.8% of the clinical sample married their first cousin (21.1% paternal uncle side, 7.8% paternal aunt, 15.8% maternal uncle side, and 20.3% maternal aunt side) and 13.1% married their double cousin (9.4% paternal uncle and maternal aunt side and 3.9% maternal uncle and paternal aunt side). The percentage of participants married to second and third cousins was 10.2% and 11.7%, respectively. We examined the sociocultural and health attitudes of the clinical sample (consanguineous parents with at least one affected child with an AR genetic disease) and compared it with the community sample (non-consanguineous parents). Table 2 shows the differences in percentages between the two samples’ attitudes toward consanguineous marriage and how they regard consanguinity. Table 2 The difference in percentages between the clinical and outside samples in sociocultural and health attitudes toward consanguinity Sociocultural attitudes toward consanguinity Clinic S Outside S P-value Health attitudes toward consanguinity Clinic S Community S P-value N (%) N (%) N (%) N (%) 1. Degree of consanguinity in the community : Common Uncommon Do Not Know 88 (68.8) 7 (5.5) 33 (25.8) 116 (75.3) 23 (14.9) 15 (9.7) < 0.001 1. Death of a child because of genetic disease : Yes No 97 (75.8) 31 (24.2) 143 (94.1) 9 (5.9) < 0.001 2. Prevalence of consanguinity : Increasing Decreasing No change Do Not Know 34 (26.6) 28 (21.9) 42 (32.8) 24 (18.8) 32 (20.8) 60 (39.0) 49 (31.8) 13 (8.4) 0.004 2. Relationship between consanguinity and productive wastage : Agree Disagree Do Not Know 43 (33.6) 0 (0.0) 85 (66.4) 47 (30.7) 37 (24.2) 69 (45.1) < 0.001 3. Consanguinity decrease divorce : Agree Disagree Do Not Know 65 (51.6) 0 (0.0) 61 (48.4) 67 (43.8) 41 (26.8) 45 (29.4) < 0.001 3. Consanguinity increases genetic defects in children : Agree Disagree Do not know 104 (81.3) 0 (0.0) 24 (18.8) 120 (77.9) 13 (8.4) 21 (13.6) 0.002 4. Supporting consanguinity : Agree Disagree Neutral 23 (18.0) 65 (50.8) 40 (41.3) 13 (8.4) 79 (51.3) 62 (40.3) 0.038 4. Child’s health problem caused by : Consanguinity Unrelated Do not know 96 (75.0) 2 (1.6) 30 (24.4) 14 (9.5) 24 (16.3) 33 (22.4) 0.000 5. Reaction to children deciding to marry relatives : Encourage them Advise against Does not affect decision 26 (20.3) 75 (58.6) 27 (21.1) 19 (12.4) 60 (39.2) 74 (48.4) < 0.001 5. A 25% chance of genetic disease in children is acceptable : Agree Disagree Do not know 62 (48.4) 55 (43.0) 11 (8.6) 74 (48.4) 28 (18.3) 51 (33.3) < 0.001 6. How common consanguinity is among your family : Common Middle Uncommon Do not know 112 (87.5) 5 (3.9) 11 (8.6) 0 (0.0) 32 (20.8) 67 (43.5) 40 (26.0) 15 (9.7) < 0.001 6. Consider prenatal testing : Yes No Do not know 43 (33.6) 69 (53.9) 16 (12.5) 109 (72.7) 24 (16.0) 17 (11.3) < 0.001 7. Importance of discussing consanguinity before marriage : Agree Disagree Do Not Know 51 (39.8) 43 (33.6) 34 (26.6) 112 (72.7) 20 (13.0) 19 (14.2) < 0.001 7. Consider marriage pretests a good practice : Yes No Do not know 123 (96.1) 3 (2.3) 2 (1.6) 145 (94.8) 6 (3.9) 2 (1.3) 0.746 Table (2) here Regarding sociocultural attitudes, significant differences were found between the two groups (Table 2 ). Generally, parents with at least one child with a genetic disease (from the clinical sample) showed a positive sociocultural view concerning consanguineous marriage in society. Most clinical respondents (68.8%) believed consanguinity is common in Kuwait, while only 5.5% believed it is uncommon. On the other hand, 14.9% of the community sample believed that it is uncommon. Regarding the prevalence of consanguinity, significant differences were also found between clinical and community samples. In the clinical sample, 26.6% believed consanguinity is increasing in society, and 21.6% believed it is not. In contrast, 20.8% of the community sample believed that it is increasing while 39.0% thought it is decreasing. Almost half of the clinical sample (51.6%) agreed that consanguinity decreases divorce, none disagreed, and 48.4% did not know. At the same time, 43.8% of the community sample agreed that consanguinity decreases divorce, 26.8% disagreed, and 29.4% did not know. Respondents were asked if they support consanguinity in general. Significant differences were found between the two samples. Of the clinical sample, 18.0% supported consanguinity compared to 8.4% of the community sample. Of the clinical sample, 20.3% reported that they would encourage their children to marry a relative, compared to 12.4% of the outsider respondents. Data found that 87.5% of the clinical sample stated that consanguinity is common in their family, compared to only 20.8% of the outsider respondents. Finally, only 39.8% of the clinical respondents believed it important to discuss consanguinity with their children before marriage compared to 72.7% of the outsider respondents. Regarding health attitudes, significant differences between the two samples were found in six out of seven examined variables (Table 2 ). Of the clinical respondents, 75.8% believed a child could die because of a genetic disease, while 94.1% of the outsider respondents believed the same. Regarding the relationship between consanguinity and productive wastage, 33.6% of the clinical sample agreed, none disagreed, and 66.4% did not know. On the other hand, 30.7% of the outsider respondents agreed, 24.2% disagreed, and 45.1% did not know. Most of the samples agreed that consanguinity increases genetic defects in children, but significant differences were found; of the clinical sample, 81.3% agreed, and none disagreed; of outsider respondents, 77.9% agreed, and 24.2% disagreed. Of the clinical respondents, 75.0% believed that children’s health problems could be caused by consanguinity, while only 9.5% of the outsider respondents believed this. Respondents were asked whether they had been informed that both themselves and their spouses carry a common pathogenic variant in a recessive gene with a 25% chance of having an affected child, it would be an acceptable possibility. Of the clinical sample, 43.0% disagreed that this is an acceptable possibility, while only 18.3% of the outsider respondents disagreed. Of the clinical respondents, only 33.6% would consider prenatal testing if there was a 25% chance that the fetus would be affected, compared to 72.7% of the outsider respondents. No significant differences were found between the two samples in the last variable, which was the respondent’s opinion of premarital carrier screening for common inherited genetic disorders. Most respondents (96.1% of the clinical and 94.8% of the outsider sample) considered the premarital carrier screening as a good practice. Some variables were examined to see the differences between people who marry their relatives and those who do not: age at marriage, number of children, number of children with the same diseases in the family, and number of children’s deaths caused by genetic diseases. Table 3 shows these differences. Table 3 The M, SD, and t values for clinical and outsider samples’ ages at marriage, number of children, number of children with the same diseases in the family, and number of children’s deaths caused by genetic diseases. Variables N Age at marriage Number of children Number of children with the same diseases in the family Number of children’s deaths caused by genetic diseases M SD P-value M SD P-value M SD P-value M SD P-value Clinical sample 128 22.91 3.75 < 0.01 3.77 2.05 .507 3.63 2.07 < 0.001 1.78 1.13 < 0.001 Community sample 154 24.37 5.23 3.63 2.39 1.81 1.74 .21 .60 M: mean, SD: standard deviation Table (3) here Data showed significant differences between consanguineous couples and non-consanguineous ones in their age at marriage, number of children with the same diseases in the family, and number of children’s deaths caused by genetic diseases. No significant differences were found in the overall number of children. Consanguineous couples visiting the clinic were married at a younger age at marriage, have higher numbers of children with the same diseases in the family and more likely to have lost their children due to genetic diseases compared to non-consanguineous families (Table 3 ). Table 4 shows the relationship between the rate of consanguinity in the respondents’ family and education, income, number of persons with the same diseases in the family, and number of children’s deaths caused by genetic diseases. Table 4 The relationship between the rate of consanguinity in the respondents’ family and some social and health variables Variables P-value Education < 0.01 Family income .090 Number of persons with the same diseases in the family < 0.001 Number of children’s deaths caused by genetic disease < 0.001 Table (4) here No relationship was found between the rate of consanguinity in the respondents’ family and the family income. Our results show an inverse relationship between the rate of consanguinity and the respondent’s education level. On the other hand, it was found that a higher rate of consanguinity in the respondents’ families corresponds with higher numbers of persons with the same diseases in the family and children’s mortality secondary to genetic diseases. Discussion Our data showed that first-cousin marriage is the most practiced type of consanguineous marriage among parents with at least one affected child with an inherited AR genetic disease (78.1%), similar to previously reported studies ( 1 ). Couples married their first cousin, whether paternal or maternal cousins were most likely to have an affected child. These results are supported by two previous studies conducted in Kuwait within the last four decades (10–11; 20). Most clinical respondents with affected children were married to close relatives. Of the clinical sample, 10.2% and 11.7% were married to second and third cousins, respectively. Further, the clinical respondents with affected children view consanguinity from a positive perspective, despite its negative effect on the health of their affected children having their children affected with inherited genetic diseases did not prevent them from expressing their positive attitudes toward consanguinity in general. Compared to the non-consanguineous couples, clinical respondents believed that consanguinity is common and is increasing in society. A regional study found that those married to their relatives and those with a high frequency of consanguineous marriages within their families had considerably higher attitude scores for such unions ( 21 – 22 ). Regarding family stability, clinical respondents were more supportive of consanguinity as they felt that it decreases the divorce rate in society. They believe that families would be more stable when the couples are relatives since that would decrease the divorce rate, although statistical evidence is lacking. This belief was also demonstrated in a prior study conducted in Kuwait, where consanguineous spouses felt a higher degree of family stability than non-consanguineous families ( 10 ). Further studies from other cultures have showed similar results ( 23 ). Despite their children's inherited genetic diseases, clinical respondents indicated that consanguinity ensures family stability, and they were more likely to encourage their children to marry their relatives as well. In addition, clinical respondents were less interested in discussing consanguineous marriage with their children before marriage than non-consanguineous respondents. Generally, the clinical sample looked positively at consanguinity from a sociocultural perspective. Interestingly, clinical respondents believed that consanguinity might lead to the death of their children secondary to inherited genetic conditions with increased risk of productive wastage compared with the community respondents. However, they were also less interested in prenatal testing compared with the other sample. When it comes to awareness about the chances of passing on genetic diseases to their children, the clinical sample was less likely to accept this possibility compared with the outsider respondents. These results may indicate that parents found it difficult to accept a hereditary explanation for the genetic disorder since it did not impact the health of all their children. This explanation was supported by another consanguinity study conducted in Saudi Arabia in which consanguineous families expressed religious or folk beliefs to explain illness ( 24 ). Increasing number of couples who are seeking premarital counseling in communities with high levels of consanguineous marriages, because of growing public awareness to prevent the occurrence of inherited genetic diseases in their offspring ( 25 ). The results of this study showed that non-consanguineous couples are seeking more counseling compared with consanguineous partners. This might explain the strong belief of pursuing consanguineous marriage despite the increased risk of passing on inherited AR genetic disorders to their offspring. Such families prioritize their social lives and family ties to other potential health consequences in their future children. Consanguineous couples in our study got married at a younger age, which has been observed in other studies as well (10; 26). This could be explained by the arranged marriage by the couple’s parents or families, not the spouses themselves. The older a person is, the more autonomy he could get in the marital process and choosing a partner outside the family circle. Our data showed that the number of affected individuals with the same disease in the family and the number of children’s deaths caused by genetic disorders are related to society’s high degree of consanguinity. In addition, this may also relate to the person’s level of education which can affect marital choices favoring consanguinity (Table 4 ), in parallel with the findings of a Saudi study, in which people with a lower level of education had a negative view toward consanguinity ( 22 ). Such association has been supported by other studies from different cultures (10; 27–29). Conclusions High level of inbreeding with increasing consanguinity rates is responsible for the high prevalence of inherited AR genetic disorders in the MENA region with subsequent morbidity and mortality. Nevertheless, consanguineous marriage is widely favored with high rate in the region. Despite the well-known associated reproductive risks, consanguineous couples positively view such marriage with advantages exceeding its risks. It must be stated here that this study was limited to the sample of parents with at least one child affected by an AR disease, compared with non-consanguineous families from the community. Since consanguinity continues to be a widespread phenomenon in the MENA region, developing and promoting premarital carrier screening programs at the national level becomes an essential preventive strategy toward reducing infant morbidity and mortality. Additional studies are needed to clarify the relationship between consanguinity and AR disorders with other variables, such as ethnicity, region, social group, and religious background. Declarations DATA AVAILABILITY STATEMENT: The datasets used and/or analyzed during the current study available from the corresponding author on reasonable request. Author Contribution Yagoub Al-Kandari (the first author) wrote the manuscript and analyzed the data. Shaker Bahzad participated in data collection and enhanced the manuscript with literature and discussion.Dina Ramadan participated in data collection and enhanced the manuscript with literature and discussion.Hind Alsharhan participated in data collection and enhanced the manuscript with literature and discussion.Mohammad Hussain participated in data collection and enhanced the manuscript with literature and discussion.Waleed Al-Herz participated in data collection and enhanced the manuscript with literature and discussion. - Ethics approval and consent to participate: The study was approved by the Research and Ethics Committee of the Ministry of Health in Kuwait and by the Kuwait University Health Sciences Center Ethical Committee Research. - Consent for publication: Informed consent was obtained from the participants for inclusion in the study. - DATA AVAILABILITY STATEMENT: The datasets used and/or analyzed during the current study available from the corresponding author on reasonable request. - Competing interests: There is no conflict of interests. - Funding: Not applicable. - Acknowledgements: Not applicable References Tadmouri, G.O., Nair, P., Obeid, T. et al. 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Iranian Journal of Public Health , 51 (2), 253 Islam, M. M., Ababneh, F. M., & Khan, M. H. R. (2018). Consanguineous marriage in Jordan: an update. Journal of biosocial science , 50 (4), 573-578. Additional Declarations No competing interests reported. Cite Share Download PDF Status: Posted Version 1 posted You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-3987895","acceptedTermsAndConditions":true,"allowDirectSubmit":true,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":282133450,"identity":"1b5368ef-ffba-44fd-b99f-52f2c0856072","order_by":0,"name":"Yagoub Al-Kandari","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAA9ElEQVRIiWNgGAWjYDACdjYgAcRs7M0HH4NFmJkb8GthhmnhOZZszMBgABRhJFILg4SPmjRYCwMBLfzNbImfC8rs8vkkeNiqCyr+RPO3A7X8qNiGU4vEYbbD0jPOJVu2Sfceuz3jjEHujMOMDYw9Z27jtuYwe4M0bxuzAZvMubTbvG0GuQ1ALcyMbbi1yB9mb/7N21ZvwCaRY1YM0jKfkBaDw2zHgLYcBmthBmnZQEiL4WG2NGuec8cNQIEszXPGOHcjUMtBfH6RO95mfJunrNpAvr354GeeCrnceecPH3zwowKP97GCAySqHwWjYBSMglGABgB5FlD5Si+PYAAAAABJRU5ErkJggg==","orcid":"","institution":"Kuwait University","correspondingAuthor":true,"prefix":"","firstName":"Yagoub","middleName":"","lastName":"Al-Kandari","suffix":""},{"id":282133451,"identity":"4b664fe6-f4ef-43dc-9a29-4407d236a96f","order_by":1,"name":"Shaker Bahzad","email":"","orcid":"","institution":"Alsabah Hospital","correspondingAuthor":false,"prefix":"","firstName":"Shaker","middleName":"","lastName":"Bahzad","suffix":""},{"id":282133452,"identity":"6a2fa931-3cd1-4a92-b876-baa4934f92e4","order_by":2,"name":"Dina Ramadan","email":"","orcid":"","institution":"Alsabah Hospital","correspondingAuthor":false,"prefix":"","firstName":"Dina","middleName":"","lastName":"Ramadan","suffix":""},{"id":282133453,"identity":"696e1fd4-064e-4196-8b12-cb4a663d5d96","order_by":3,"name":"Hind Alsharhan","email":"","orcid":"","institution":"Kuwait University","correspondingAuthor":false,"prefix":"","firstName":"Hind","middleName":"","lastName":"Alsharhan","suffix":""},{"id":282133454,"identity":"b476bb1c-3e7f-4474-b6bd-a91b69bf1aa8","order_by":4,"name":"Mohammad Hussain","email":"","orcid":"","institution":"McGail University","correspondingAuthor":false,"prefix":"","firstName":"Mohammad","middleName":"","lastName":"Hussain","suffix":""},{"id":282133455,"identity":"fb5cd487-6866-4b78-9b94-d6977cebc6fb","order_by":5,"name":"Waleed Al-Herz","email":"","orcid":"","institution":"Kuwait University","correspondingAuthor":false,"prefix":"","firstName":"Waleed","middleName":"","lastName":"Al-Herz","suffix":""}],"badges":[],"createdAt":"2024-02-25 11:59:58","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-3987895/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-3987895/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":63755779,"identity":"17e1c5e6-43a0-40d1-bb88-d7e8803d2077","added_by":"auto","created_at":"2024-09-02 05:04:47","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":685840,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-3987895/v1/cd998241-bcde-4ad0-855d-d7b2a65aa9f5.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"Attitudes of parents with a child with autosomal recessive disease toward consanguinity","fulltext":[{"header":"Introduction","content":"\u003cp\u003eConsanguineous marriage is widely practiced in Arab and Middle Eastern countries with highest rates compared to the rest of the world (1). \u0026nbsp;The prevalence of consanguinity in the Middle East and North Africa (MENA) region is estimated to be around 25-60% favoring first cousin marriages resulting in abundance of autosomal recessive (AR) disorders in the region.\u0026nbsp;The relationship between consanguinity, and the prevalence of (AR) diseases is well documented (1-7). Many Arab societies are still tribal with limited number of ancestors resulting in high burden of certain genetic disorders confined to such tribal groups or families (2).\u003c/p\u003e\n\u003cp\u003eDespite the known risk of increased incidence of inherited AR disorders in general and the high prevalence of certain inherited genetic condition among particular tribes, endogamy and consanguineous marriages have been strongly favored and respected among individuals in the MENA region due to a number of socio-cultural factors. Such factors include maintenance of family structure and property, ease of marital arrangements, better relations with in-laws, lesser risk of hidden financial and health issues and the belief of promoting marriage stability (1).\u0026nbsp;In the United Arab Emirates, despite the numerous obstacles that women confront, most participants continued to believe in the consanguineous marriage system (8). Data from Saudi Arabia indicated that consanguineous marriages are still common despite them knowing the increased risk of producing children with genetic disorders (9).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eIn Kuwait, consanguinity is still preferred, according to two studies conducted in the last decade using data from the prior three decades despite known detrimental reproductive health consequences in the offspring (10-11). The earliest study showed that almost half of the married couples in Kuwait were consanguineous (11), and the most recent one showed a little decline but still indicated a high number of consanguinity at 46% (10). Some research studies recently reviewed the relationship between consanguinity and increased rate of certain inherited genetic disorders in Kuwait, which include mitochondrial diseases (12-13), inborn errors of immunity\u0026nbsp;(14-15),\u0026nbsp;classic homocystinuria,\u0026nbsp;congenital malformations (16-17), primary ciliary dyskinesia (18),\u0026nbsp;retinitis pigmentosa (19), and\u0026nbsp;hyperoxaluria type 1 (20).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThe major aim of this study is to examine the perspective and attitudes of parents with one or more affected children by an AR disease towards consanguineous marriages. We included parents during their visits to various specialty clinics in Kuwait. Our study examined the impact of consanguineous marriage in the setting of medical and social aspects. To learn the attitudes of this sample group, their responses were compared with those of non-consanguineous married couples in the community. This study tried to answer the following questions:\u0026nbsp;\u003c/p\u003e\n\u003col\u003e\n \u003cli\u003eWhat are the differences between the clinical and community samples regarding sociocultural and health attitudes toward consanguinidiseases.spondents’ age at marriage, number of children, number of children who have the same diseases in the family, and number of children’s deaths caused by genetic diseases?\u003c/li\u003e\n \u003cli\u003eWhat is the relationship between the rate of consanguinity in the respondents’ families and some social and health variables?\u003c/li\u003e\n\u003c/ol\u003e"},{"header":"Methods","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eSubjects\u003c/h2\u003e \u003cp\u003eA total of 285 parents were invited to participate in this study. The sample was divided into two groups: clinical sample including parents attending various clinics in hospitals and a community sample. For the first group, a total of 150 consanguineous parents who attended outpatient clinics for either inborn errors of immunity, inborn errors of metabolism or hematologic diseases and had at least one child confirmed to have an AR disease were invited. Out of 150 subjects, 128 (85.3%) responded to the questionnaire (53 males [41.4%] and 75 females [58.6%]). The age range was 24\u0026ndash;60-year-old (mean [M]\u0026thinsp;=\u0026thinsp;39.71; standard deviation [SD]\u0026thinsp;=\u0026thinsp;8.56). The other group included 154 respondents from outside the clinic (community) (49 males [31.8%] and 105 females [68.2%]). The age range was 30\u0026ndash;73-year-old (M\u0026thinsp;=\u0026thinsp;42.47; SD\u0026thinsp;=\u0026thinsp;12.94). They were all married to non-relatives. The control group was selected from outside the clinic to achieve the study\u0026rsquo;s major aim. The aims of the study were explained for all subjects. The study was approved by the Research and Ethics Committee of the Ministry of Health in Kuwait and by the Kuwait University Health Sciences Center Ethical Committee Research. Informed consent was obtained from the participants for inclusion in the study.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec4\" class=\"Section2\"\u003e \u003ch2\u003eVariables\u003c/h2\u003e \u003cp\u003eA self-administered survey was developed by a clinical immunologist (WA), a medical anthropologist (YA), and a medical geneticist (SB). It included two major sections. The first section included demographic and personal data, such as sex, governorate, age, education level (six categories), family income (eight categories), year of marriage, age at marriage, and number of children. Also, the respondents were asked to determine the degree of consanguinity with their spouses. It was divided into nine categories: first cousins on the father\u0026rsquo;s brother\u0026rsquo;s side, father\u0026rsquo;s sister\u0026rsquo;s side, mother\u0026rsquo;s brother\u0026rsquo;s side, or mother\u0026rsquo;s sister\u0026rsquo;s side; double cousins through the father\u0026rsquo;s brother and the mother\u0026rsquo;s sister or the mother\u0026rsquo;s brother and the father\u0026rsquo;s sister; second cousins; third cousins; and non-consanguineous.\u003c/p\u003e \u003cp\u003eThe second section of the questionnaire was about the subjects\u0026rsquo; attitudes toward consanguinity and was divided into two parts.\u003c/p\u003e \u003cp\u003e \u003cspan type=\"ItalicUnderline\" class=\"ItalicUnderline\" name=\"Emphasis\"\u003eSociocultural attitudes\u003c/span\u003e: This section explored sociocultural attitudes toward consanguinity and collected six data points: the frequency of consanguineous marriage in the community (\u0026ldquo;common,\u0026rdquo; \u0026ldquo;uncommon,\u0026rdquo; or \u0026ldquo;do not know\u0026rdquo;), whether consanguinity is increasing in the society (\u0026ldquo;increasing,\u0026rdquo; \u0026ldquo;decreasing,\u0026rdquo; \u0026ldquo;no change,\u0026rdquo; or \u0026ldquo;do not know\u0026rdquo;), whether consanguinity decreases divorce in the society (\u0026ldquo;agree,\u0026rdquo; \u0026ldquo;disagree,\u0026rdquo; or \u0026ldquo;do not know\u0026rdquo;), whether participants supports consanguinity (\u0026ldquo;agree,\u0026rdquo; \u0026ldquo;disagree,\u0026rdquo; and \u0026ldquo;neutral\u0026rdquo;), how participants would react if their child decided to marry a relative (\u0026ldquo;encourage him or her,\u0026rdquo; \u0026ldquo;advise against,\u0026rdquo; or \u0026ldquo;does not affect the decision to allow the child to marry\u0026rdquo;), how common consanguinity was among participants\u0026rsquo; families (\u0026ldquo;common,\u0026rdquo; \u0026ldquo;middle,\u0026rdquo; \u0026ldquo;uncommon,\u0026rdquo; or \u0026ldquo;do not know\u0026rdquo;), and whether it is important to discuss consanguinity before marriage (\u0026ldquo;agree,\u0026rdquo; \u0026ldquo;disagree,\u0026rdquo; or \u0026ldquo;do not know\u0026rdquo;).\u003c/p\u003e \u003cp\u003e \u003cspan type=\"ItalicUnderline\" class=\"ItalicUnderline\" name=\"Emphasis\"\u003eHealth attitudes\u003c/span\u003e: This section examined health attitudes towards consanguinity and collected six data points: whether the participant thought the death of a child could be caused by genetic disease (\u0026ldquo;yes\u0026rdquo; or \u0026ldquo;no\u0026rdquo;), whether there is a relationship between consanguinity and abortion (\u0026ldquo;agree,\u0026rdquo; \u0026ldquo;disagree,\u0026rdquo; or \u0026ldquo;do not know\u0026rdquo;), whether consanguinity increases genetic defects in children (\u0026ldquo;agree,\u0026rdquo; \u0026ldquo;disagree,\u0026rdquo; or \u0026ldquo;do not know\u0026rdquo;), whether the participant\u0026rsquo;s child\u0026rsquo;s health problem was caused by (\u0026ldquo;consanguinity,\u0026rdquo; \u0026ldquo;unrelated to consanguinity,\u0026rdquo; or \u0026ldquo;do not know\u0026rdquo;), whether a 25% chance that the participant\u0026rsquo;s fetus would inherit a recessive disease is an acceptable possibility (\u0026ldquo;agree,\u0026rdquo; \u0026ldquo;disagree,\u0026rdquo; or \u0026ldquo;do not know\u0026rdquo;), whether the participant would consider prenatal testing if there were a chance of passing on a recessive disease (\u0026ldquo;yes,\u0026rdquo; \u0026ldquo;no,\u0026rdquo; or \u0026ldquo;do not know\u0026rdquo;), and whether the participant considered marriage pretests a good practice (\u0026ldquo;yes,\u0026rdquo; \u0026ldquo;no,\u0026rdquo; or \u0026ldquo;do not know\u0026rdquo;).\u003c/p\u003e \u003cp\u003eFive colleagues in related fields reviewed the questionnaire for validity. The questionnaire was tested for reliability in a pilot study of 32 subjects during a two-week period.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec5\" class=\"Section2\"\u003e \u003ch2\u003eStatistical procedures\u003c/h2\u003e \u003cp\u003eStatistical Package for Social Sciences (Version 25) was used for data entry and analysis. Descriptive and inferential statistics were used. Chi-square test was used to examine the difference in percentages between the clinical and outside samples\u0026rsquo; sociocultural and health attitudes toward consanguinity. Student t-test was used to examine the differences between clinical and outside respondents\u0026rsquo; age at marriage, number of children, number of children who have the same diseases in the family, and number of children\u0026rsquo;s deaths caused by genetic diseases. Finally, the Pearson correlation test was used to examine the relationship between the rate of consanguinity in the respondents\u0026rsquo; families and some social and health variables.\u003c/p\u003e \u003c/div\u003e"},{"header":"Results","content":"\u003cp\u003eTable\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e shows the frequencies and percentages of the degree of blood relation among respondents from the clinics.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eThe clinical respondents\u0026rsquo; degrees of consanguinity\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"4\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDegree of consanguinity\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFreq.\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003e%\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003eCum %\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e1st cousin (paternal uncle side)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e27\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e21.1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e21.1\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e1st cousin (paternal aunt side)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e10\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e7.8\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e28.9\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e1st cousin (maternal uncle side)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e20\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e15.8\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e44.5\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e1st cousin (maternal aunt side)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e26\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e20.3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e64.8\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDouble cousin (paternal uncle and maternal aunt side)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e12\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e9.4\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e74.2\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDouble cousin (maternal uncle and paternal aunt side)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e5\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e3.9\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e78.1\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSecond cousin\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e12\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e10.2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e88.3\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eThird cousin\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e15\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e11.7\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e100\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eTable\u0026nbsp;(1) here\u003c/p\u003e \u003cp\u003eData showed that most respondents were married to their first cousins (78.1%). It also showed that 64.8% of the clinical sample married their first cousin (21.1% paternal uncle side, 7.8% paternal aunt, 15.8% maternal uncle side, and 20.3% maternal aunt side) and 13.1% married their double cousin (9.4% paternal uncle and maternal aunt side and 3.9% maternal uncle and paternal aunt side). The percentage of participants married to second and third cousins was 10.2% and 11.7%, respectively.\u003c/p\u003e \u003cp\u003e We examined the sociocultural and health attitudes of the clinical sample (consanguineous parents with at least one affected child with an AR genetic disease) and compared it with the community sample (non-consanguineous parents). Table\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e shows the differences in percentages between the two samples\u0026rsquo; attitudes toward consanguineous marriage and how they regard consanguinity.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab2\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eThe difference in percentages between the clinical and outside samples in sociocultural and health attitudes toward consanguinity\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"8\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c5\" colnum=\"5\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c6\" colnum=\"6\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c7\" colnum=\"7\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c8\" colnum=\"8\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003e\u003cspan type=\"Underline\" class=\"Underline\" name=\"Emphasis\"\u003eSociocultural attitudes toward consanguinity\u003c/span\u003e\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eClinic S\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eOutside S\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003eP-value\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c5\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003e\u003cspan type=\"Underline\" class=\"Underline\" name=\"Emphasis\"\u003eHealth attitudes toward consanguinity\u003c/span\u003e\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c6\"\u003e \u003cp\u003eClinic S\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c7\"\u003e \u003cp\u003eCommunity S\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c8\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003eP-value\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cb\u003eN (%)\u003c/b\u003e\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u003cb\u003eN (%)\u003c/b\u003e\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c6\"\u003e \u003cp\u003e\u003cb\u003eN (%)\u003c/b\u003e\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c7\"\u003e \u003cp\u003e\u003cb\u003eN (%)\u003c/b\u003e\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003e1. Degree of consanguinity in the community\u003c/b\u003e:\u003c/p\u003e \u003cp\u003eCommon\u003c/p\u003e \u003cp\u003eUncommon\u003c/p\u003e \u003cp\u003eDo Not Know\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e88 (68.8)\u003c/p\u003e \u003cp\u003e7 (5.5)\u003c/p\u003e \u003cp\u003e33 (25.8)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e116 (75.3)\u003c/p\u003e \u003cp\u003e23 (14.9)\u003c/p\u003e \u003cp\u003e15 (9.7)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e\u0026lt;\u0026thinsp;0.001\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e\u003cb\u003e1. Death of a child because of genetic disease\u003c/b\u003e:\u003c/p\u003e \u003cp\u003eYes\u003c/p\u003e \u003cp\u003eNo\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e97 (75.8)\u003c/p\u003e \u003cp\u003e31 (24.2)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e143 (94.1)\u003c/p\u003e \u003cp\u003e9 (5.9)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003e\u0026lt;\u0026thinsp;0.001\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003e2. Prevalence of consanguinity\u003c/b\u003e:\u003c/p\u003e \u003cp\u003eIncreasing\u003c/p\u003e \u003cp\u003eDecreasing\u003c/p\u003e \u003cp\u003eNo change\u003c/p\u003e \u003cp\u003eDo Not Know\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e34 (26.6)\u003c/p\u003e \u003cp\u003e28 (21.9)\u003c/p\u003e \u003cp\u003e42 (32.8)\u003c/p\u003e \u003cp\u003e24 (18.8)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e32 (20.8)\u003c/p\u003e \u003cp\u003e60 (39.0)\u003c/p\u003e \u003cp\u003e49 (31.8)\u003c/p\u003e \u003cp\u003e13 (8.4)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e0.004\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e\u003cb\u003e2. Relationship between consanguinity and productive wastage\u003c/b\u003e:\u003c/p\u003e \u003cp\u003eAgree\u003c/p\u003e \u003cp\u003eDisagree\u003c/p\u003e \u003cp\u003eDo Not Know\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e43 (33.6)\u003c/p\u003e \u003cp\u003e0 (0.0)\u003c/p\u003e \u003cp\u003e85 (66.4)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e47 (30.7)\u003c/p\u003e \u003cp\u003e37 (24.2)\u003c/p\u003e \u003cp\u003e69 (45.1)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003e\u0026lt;\u0026thinsp;0.001\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003e3. Consanguinity decrease divorce\u003c/b\u003e:\u003c/p\u003e \u003cp\u003eAgree\u003c/p\u003e \u003cp\u003eDisagree\u003c/p\u003e \u003cp\u003eDo Not Know\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e65 (51.6)\u003c/p\u003e \u003cp\u003e0 (0.0)\u003c/p\u003e \u003cp\u003e61 (48.4)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e67 (43.8)\u003c/p\u003e \u003cp\u003e41 (26.8)\u003c/p\u003e \u003cp\u003e45 (29.4)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e\u0026lt;\u0026thinsp;0.001\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e\u003cb\u003e3. Consanguinity increases genetic defects in children\u003c/b\u003e:\u003c/p\u003e \u003cp\u003eAgree\u003c/p\u003e \u003cp\u003eDisagree\u003c/p\u003e \u003cp\u003eDo not know\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e104 (81.3)\u003c/p\u003e \u003cp\u003e0 (0.0)\u003c/p\u003e \u003cp\u003e24 (18.8)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e120 (77.9)\u003c/p\u003e \u003cp\u003e13 (8.4)\u003c/p\u003e \u003cp\u003e21 (13.6)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003e0.002\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003e4. Supporting consanguinity\u003c/b\u003e:\u003c/p\u003e \u003cp\u003eAgree\u003c/p\u003e \u003cp\u003eDisagree\u003c/p\u003e \u003cp\u003eNeutral\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e23 (18.0)\u003c/p\u003e \u003cp\u003e65 (50.8)\u003c/p\u003e \u003cp\u003e40 (41.3)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e13 (8.4)\u003c/p\u003e \u003cp\u003e79 (51.3)\u003c/p\u003e \u003cp\u003e62 (40.3)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e0.038\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e\u003cb\u003e4. Child\u0026rsquo;s health problem caused by\u003c/b\u003e:\u003c/p\u003e \u003cp\u003eConsanguinity\u003c/p\u003e \u003cp\u003eUnrelated\u003c/p\u003e \u003cp\u003eDo not know\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e96 (75.0)\u003c/p\u003e \u003cp\u003e2 (1.6)\u003c/p\u003e \u003cp\u003e30 (24.4)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e14 (9.5)\u003c/p\u003e \u003cp\u003e24 (16.3)\u003c/p\u003e \u003cp\u003e33 (22.4)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003e0.000\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003e5. Reaction to children deciding to marry relatives\u003c/b\u003e:\u003c/p\u003e \u003cp\u003eEncourage them\u003c/p\u003e \u003cp\u003eAdvise against\u003c/p\u003e \u003cp\u003eDoes not affect decision\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e26 (20.3)\u003c/p\u003e \u003cp\u003e75 (58.6)\u003c/p\u003e \u003cp\u003e27 (21.1)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e19 (12.4)\u003c/p\u003e \u003cp\u003e60 (39.2)\u003c/p\u003e \u003cp\u003e74 (48.4)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e\u0026lt;\u0026thinsp;0.001\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e\u003cb\u003e5. A 25% chance of genetic disease in children is acceptable\u003c/b\u003e:\u003c/p\u003e \u003cp\u003eAgree\u003c/p\u003e \u003cp\u003eDisagree\u003c/p\u003e \u003cp\u003eDo not know\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e62 (48.4)\u003c/p\u003e \u003cp\u003e55 (43.0)\u003c/p\u003e \u003cp\u003e11 (8.6)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e74 (48.4)\u003c/p\u003e \u003cp\u003e28 (18.3)\u003c/p\u003e \u003cp\u003e51 (33.3)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003e\u0026lt;\u0026thinsp;0.001\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003e6. How common consanguinity is among your family\u003c/b\u003e:\u003c/p\u003e \u003cp\u003eCommon\u003c/p\u003e \u003cp\u003eMiddle\u003c/p\u003e \u003cp\u003eUncommon\u003c/p\u003e \u003cp\u003eDo not know\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e112 (87.5)\u003c/p\u003e \u003cp\u003e5 (3.9)\u003c/p\u003e \u003cp\u003e11 (8.6)\u003c/p\u003e \u003cp\u003e0 (0.0)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e32 (20.8)\u003c/p\u003e \u003cp\u003e67 (43.5)\u003c/p\u003e \u003cp\u003e40 (26.0)\u003c/p\u003e \u003cp\u003e15 (9.7)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e\u0026lt;\u0026thinsp;0.001\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e\u003cb\u003e6. Consider prenatal testing\u003c/b\u003e:\u003c/p\u003e \u003cp\u003eYes\u003c/p\u003e \u003cp\u003eNo\u003c/p\u003e \u003cp\u003eDo not know\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e43 (33.6)\u003c/p\u003e \u003cp\u003e69 (53.9)\u003c/p\u003e \u003cp\u003e16 (12.5)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e109 (72.7)\u003c/p\u003e \u003cp\u003e24 (16.0)\u003c/p\u003e \u003cp\u003e17 (11.3)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003e\u0026lt;\u0026thinsp;0.001\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003e7. Importance of discussing consanguinity before marriage\u003c/b\u003e:\u003c/p\u003e \u003cp\u003eAgree\u003c/p\u003e \u003cp\u003eDisagree\u003c/p\u003e \u003cp\u003eDo Not Know\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e51 (39.8)\u003c/p\u003e \u003cp\u003e43 (33.6)\u003c/p\u003e \u003cp\u003e34 (26.6)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e112 (72.7)\u003c/p\u003e \u003cp\u003e20 (13.0)\u003c/p\u003e \u003cp\u003e19 (14.2)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e\u0026lt;\u0026thinsp;0.001\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e\u003cb\u003e7. Consider marriage pretests a good practice\u003c/b\u003e:\u003c/p\u003e \u003cp\u003eYes\u003c/p\u003e \u003cp\u003eNo\u003c/p\u003e \u003cp\u003eDo not know\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e123 (96.1)\u003c/p\u003e \u003cp\u003e3 (2.3)\u003c/p\u003e \u003cp\u003e2 (1.6)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e145 (94.8)\u003c/p\u003e \u003cp\u003e6 (3.9)\u003c/p\u003e \u003cp\u003e2 (1.3)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003e0.746\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eTable\u0026nbsp;(2) here\u003c/p\u003e \u003cp\u003eRegarding sociocultural attitudes, significant differences were found between the two groups (Table\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e). Generally, parents with at least one child with a genetic disease (from the clinical sample) showed a positive sociocultural view concerning consanguineous marriage in society. Most clinical respondents (68.8%) believed consanguinity is common in Kuwait, while only 5.5% believed it is uncommon. On the other hand, 14.9% of the community sample believed that it is uncommon. Regarding the prevalence of consanguinity, significant differences were also found between clinical and community samples. In the clinical sample, 26.6% believed consanguinity is increasing in society, and 21.6% believed it is not. In contrast, 20.8% of the community sample believed that it is increasing while 39.0% thought it is decreasing. Almost half of the clinical sample (51.6%) agreed that consanguinity decreases divorce, none disagreed, and 48.4% did not know. At the same time, 43.8% of the community sample agreed that consanguinity decreases divorce, 26.8% disagreed, and 29.4% did not know. Respondents were asked if they support consanguinity in general. Significant differences were found between the two samples. Of the clinical sample, 18.0% supported consanguinity compared to 8.4% of the community sample. Of the clinical sample, 20.3% reported that they would encourage their children to marry a relative, compared to 12.4% of the outsider respondents. Data found that 87.5% of the clinical sample stated that consanguinity is common in their family, compared to only 20.8% of the outsider respondents. Finally, only 39.8% of the clinical respondents believed it important to discuss consanguinity with their children before marriage compared to 72.7% of the outsider respondents.\u003c/p\u003e \u003cp\u003eRegarding health attitudes, significant differences between the two samples were found in six out of seven examined variables (Table\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e). Of the clinical respondents, 75.8% believed a child could die because of a genetic disease, while 94.1% of the outsider respondents believed the same. Regarding the relationship between consanguinity and productive wastage, 33.6% of the clinical sample agreed, none disagreed, and 66.4% did not know. On the other hand, 30.7% of the outsider respondents agreed, 24.2% disagreed, and 45.1% did not know. Most of the samples agreed that consanguinity increases genetic defects in children, but significant differences were found; of the clinical sample, 81.3% agreed, and none disagreed; of outsider respondents, 77.9% agreed, and 24.2% disagreed. Of the clinical respondents, 75.0% believed that children\u0026rsquo;s health problems could be caused by consanguinity, while only 9.5% of the outsider respondents believed this. Respondents were asked whether they had been informed that both themselves and their spouses carry a common pathogenic variant in a recessive gene with a 25% chance of having an affected child, it would be an acceptable possibility. Of the clinical sample, 43.0% disagreed that this is an acceptable possibility, while only 18.3% of the outsider respondents disagreed. Of the clinical respondents, only 33.6% would consider prenatal testing if there was a 25% chance that the fetus would be affected, compared to 72.7% of the outsider respondents. No significant differences were found between the two samples in the last variable, which was the respondent\u0026rsquo;s opinion of premarital carrier screening for common inherited genetic disorders. Most respondents (96.1% of the clinical and 94.8% of the outsider sample) considered the premarital carrier screening as a good practice.\u003c/p\u003e \u003cp\u003eSome variables were examined to see the differences between people who marry their relatives and those who do not: age at marriage, number of children, number of children with the same diseases in the family, and number of children\u0026rsquo;s deaths caused by genetic diseases. Table\u0026nbsp;\u003cspan refid=\"Tab3\" class=\"InternalRef\"\u003e3\u003c/span\u003e shows these differences.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab3\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 3\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eThe M, SD, and t values for clinical and outsider samples\u0026rsquo; ages at marriage, number of children, number of children with the same diseases in the family, and number of children\u0026rsquo;s deaths caused by genetic diseases.\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"14\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c5\" colnum=\"5\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c6\" colnum=\"6\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c7\" colnum=\"7\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c8\" colnum=\"8\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c9\" colnum=\"9\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c10\" colnum=\"10\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c11\" colnum=\"11\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c12\" colnum=\"12\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c13\" colnum=\"13\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c14\" colnum=\"14\"\u003e\u003c/div\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003eVariables\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003e\u003cem\u003eN\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"3\" nameend=\"c5\" namest=\"c3\"\u003e \u003cp\u003eAge at marriage\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"3\" nameend=\"c8\" namest=\"c6\"\u003e \u003cp\u003eNumber of children\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"3\" nameend=\"c11\" namest=\"c9\"\u003e \u003cp\u003eNumber of children with the same diseases in the family\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"3\" nameend=\"c14\" namest=\"c12\"\u003e \u003cp\u003eNumber of children\u0026rsquo;s deaths caused by genetic diseases\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u003cem\u003eM\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e\u003cem\u003eSD\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e\u003cem\u003eP-value\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e\u003cem\u003eM\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e\u003cem\u003eSD\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003e\u003cem\u003eP-value\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003e\u003cem\u003eM\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c10\"\u003e \u003cp\u003e\u003cem\u003eSD\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c11\"\u003e \u003cp\u003e\u003cem\u003eP-value\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c12\"\u003e \u003cp\u003e\u003cem\u003eM\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c13\"\u003e \u003cp\u003e\u003cem\u003eSD\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c14\"\u003e \u003cp\u003e\u003cem\u003eP-value\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eClinical sample\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e128\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e22.91\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e3.75\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003e\u0026lt;\u0026thinsp;0.01\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e3.77\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e2.05\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003e.507\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003e3.63\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c10\"\u003e \u003cp\u003e2.07\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c11\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003e\u0026lt;\u0026thinsp;0.001\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c12\"\u003e \u003cp\u003e1.78\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c13\"\u003e \u003cp\u003e1.13\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c14\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003e\u0026lt;\u0026thinsp;0.001\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCommunity sample\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e154\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e24.37\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e5.23\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e3.63\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e2.39\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003e1.81\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c10\"\u003e \u003cp\u003e1.74\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c12\"\u003e \u003cp\u003e.21\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c13\"\u003e \u003cp\u003e.60\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003ctfoot\u003e \u003ctr\u003e\u003ctd colspan=\"14\"\u003eM: mean, SD: standard deviation\u003c/td\u003e\u003c/tr\u003e \u003c/tfoot\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eTable\u0026nbsp;(3) here\u003c/p\u003e \u003cp\u003eData showed significant differences between consanguineous couples and non-consanguineous ones in their age at marriage, number of children with the same diseases in the family, and number of children\u0026rsquo;s deaths caused by genetic diseases. No significant differences were found in the overall number of children. Consanguineous couples visiting the clinic were married at a younger age at marriage, have higher numbers of children with the same diseases in the family and more likely to have lost their children due to genetic diseases compared to non-consanguineous families (Table\u0026nbsp;\u003cspan refid=\"Tab3\" class=\"InternalRef\"\u003e3\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eTable\u0026nbsp;\u003cspan refid=\"Tab4\" class=\"InternalRef\"\u003e4\u003c/span\u003e shows the relationship between the rate of consanguinity in the respondents\u0026rsquo; family and education, income, number of persons with the same diseases in the family, and number of children\u0026rsquo;s deaths caused by genetic diseases.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab4\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 4\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eThe relationship between the rate of consanguinity in the respondents\u0026rsquo; family and some social and health variables\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eVariables\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eP-value\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eEducation\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e\u0026lt;\u0026thinsp;0.01\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFamily income\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e.090\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eNumber of persons with the same diseases in the family\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e\u0026lt;\u0026thinsp;0.001\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eNumber of children\u0026rsquo;s deaths caused by genetic disease\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e\u0026lt;\u0026thinsp;0.001\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eTable\u0026nbsp;(4) here\u003c/p\u003e \u003cp\u003eNo relationship was found between the rate of consanguinity in the respondents\u0026rsquo; family and the family income. Our results show an inverse relationship between the rate of consanguinity and the respondent\u0026rsquo;s education level. On the other hand, it was found that a higher rate of consanguinity in the respondents\u0026rsquo; families corresponds with higher numbers of persons with the same diseases in the family and children\u0026rsquo;s mortality secondary to genetic diseases.\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003eOur data showed that first-cousin marriage is the most practiced type of consanguineous marriage among parents with at least one affected child with an inherited AR genetic disease (78.1%), similar to previously reported studies (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e). Couples married their first cousin, whether paternal or maternal cousins were most likely to have an affected child. These results are supported by two previous studies conducted in Kuwait within the last four decades (10\u0026ndash;11; 20). Most clinical respondents with affected children were married to close relatives. Of the clinical sample, 10.2% and 11.7% were married to second and third cousins, respectively. Further, the clinical respondents with affected children view consanguinity from a positive perspective, despite its negative effect on the health of their affected children having their children affected with inherited genetic diseases did not prevent them from expressing their positive attitudes toward consanguinity in general. Compared to the non-consanguineous couples, clinical respondents believed that consanguinity is common and is increasing in society. A regional study found that those married to their relatives and those with a high frequency of consanguineous marriages within their families had considerably higher attitude scores for such unions (\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eRegarding family stability, clinical respondents were more supportive of consanguinity as they felt that it decreases the divorce rate in society. They believe that families would be more stable when the couples are relatives since that would decrease the divorce rate, although statistical evidence is lacking. This belief was also demonstrated in a prior study conducted in Kuwait, where consanguineous spouses felt a higher degree of family stability than non-consanguineous families (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e). Further studies from other cultures have showed similar results (\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e). Despite their children's inherited genetic diseases, clinical respondents indicated that consanguinity ensures family stability, and they were more likely to encourage their children to marry their relatives as well. In addition, clinical respondents were less interested in discussing consanguineous marriage with their children before marriage than non-consanguineous respondents. Generally, the clinical sample looked positively at consanguinity from a sociocultural perspective.\u003c/p\u003e \u003cp\u003eInterestingly, clinical respondents believed that consanguinity might lead to the death of their children secondary to inherited genetic conditions with increased risk of productive wastage compared with the community respondents. However, they were also less interested in prenatal testing compared with the other sample. When it comes to awareness about the chances of passing on genetic diseases to their children, the clinical sample was less likely to accept this possibility compared with the outsider respondents. These results may indicate that parents found it difficult to accept a hereditary explanation for the genetic disorder since it did not impact the health of all their children. This explanation was supported by another consanguinity study conducted in Saudi Arabia in which consanguineous families expressed religious or folk beliefs to explain illness (\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eIncreasing number of couples who are seeking premarital counseling in communities with high levels of consanguineous marriages, because of growing public awareness to prevent the occurrence of inherited genetic diseases in their offspring (\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e). The results of this study showed that non-consanguineous couples are seeking more counseling compared with consanguineous partners. This might explain the strong belief of pursuing consanguineous marriage despite the increased risk of passing on inherited AR genetic disorders to their offspring. Such families prioritize their social lives and family ties to other potential health consequences in their future children. Consanguineous couples in our study got married at a younger age, which has been observed in other studies as well (10; 26). This could be explained by the arranged marriage by the couple\u0026rsquo;s parents or families, not the spouses themselves. The older a person is, the more autonomy he could get in the marital process and choosing a partner outside the family circle. Our data showed that the number of affected individuals with the same disease in the family and the number of children\u0026rsquo;s deaths caused by genetic disorders are related to society\u0026rsquo;s high degree of consanguinity. In addition, this may also relate to the person\u0026rsquo;s level of education which can affect marital choices favoring consanguinity (Table\u0026nbsp;\u003cspan refid=\"Tab4\" class=\"InternalRef\"\u003e4\u003c/span\u003e), in parallel with the findings of a Saudi study, in which people with a lower level of education had a negative view toward consanguinity (\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e). Such association has been supported by other studies from different cultures (10; 27\u0026ndash;29).\u003c/p\u003e"},{"header":"Conclusions","content":"\u003cp\u003eHigh level of inbreeding with increasing consanguinity rates is responsible for the high prevalence of inherited AR genetic disorders in the MENA region with subsequent morbidity and mortality. Nevertheless, consanguineous marriage is widely favored with high rate in the region. Despite the well-known associated reproductive risks, consanguineous couples positively view such marriage with advantages exceeding its risks. It must be stated here that this study was limited to the sample of parents with at least one child affected by an AR disease, compared with non-consanguineous families from the community. Since consanguinity continues to be a widespread phenomenon in the MENA region, developing and promoting premarital carrier screening programs at the national level becomes an essential preventive strategy toward reducing infant morbidity and mortality. Additional studies are needed to clarify the relationship between consanguinity and AR disorders with other variables, such as ethnicity, region, social group, and religious background.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eDATA AVAILABILITY STATEMENT:\u0026nbsp;\u003c/strong\u003eThe datasets used and/or analyzed during the current study available from the corresponding author on reasonable request.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthor Contribution\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eYagoub Al-Kandari (the first author) wrote the manuscript and analyzed the data. Shaker Bahzad participated in data collection and enhanced the manuscript with literature and discussion.Dina Ramadan participated in data collection and enhanced the manuscript with literature and discussion.Hind Alsharhan participated in data collection and enhanced the manuscript with literature and discussion.Mohammad Hussain participated in data collection and enhanced the manuscript with literature and discussion.Waleed Al-Herz participated in data collection and enhanced the manuscript with literature and discussion.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e- Ethics approval and consent to participate:\u003c/strong\u003e The study was approved by the Research and Ethics Committee of the Ministry of Health in Kuwait and by the Kuwait University Health Sciences Center Ethical Committee Research.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e- Consent for publication:\u003c/strong\u003e Informed consent was obtained from the participants for inclusion in the study.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e- DATA AVAILABILITY STATEMENT:\u0026nbsp;\u003c/strong\u003eThe datasets used and/or analyzed during the current study available from the corresponding author on reasonable request.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e- Competing interests:\u003c/strong\u003e There is no conflict of interests.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e- Funding:\u003c/strong\u003e Not applicable.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e- Acknowledgements:\u003c/strong\u003e Not applicable\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eTadmouri, G.O., Nair, P., Obeid, T. et al. 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(2020). \u003cem\u003eEducation and Consanguineous Marriage\u003c/em\u003e (No. w28212). National Bureau of Economic Research.\u003c/li\u003e\n\u003cli\u003eAlfi OS, Chang R, Azen SP. Evidence for genetic control of nondisjunction in man. Am J Hum Genet. 1980 Jul; 32(4):477\u0026ndash;483.\u003c/li\u003e\n\u003cli\u003eEl Goundali, K., Chebabe, M., Laamiri, F. Z., \u0026amp; Hilali, A. (2022). The Determinants of Consanguineous Marriages among the Arab Population: A Systematic Review. \u003cem\u003eIranian Journal of Public Health\u003c/em\u003e, \u003cem\u003e51\u003c/em\u003e(2), 253\u003c/li\u003e\n\u003cli\u003eIslam, M. M., Ababneh, F. M., \u0026amp; Khan, M. H. R. (2018). Consanguineous marriage in Jordan: an update. \u003cem\u003eJournal of biosocial science\u003c/em\u003e, \u003cem\u003e50\u003c/em\u003e(4), 573-578.\u003cbr\u003e \u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":true,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"
[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"","lastPublishedDoi":"10.21203/rs.3.rs-3987895/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-3987895/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cem\u003eThe major aim of this study is to examine the perspective and attitudes of parents with one or more affected children by an AR disease towards consanguineous marriages. A total of 285 parents were invited to participate in this study. The sample was divided into two groups: clinical sample including parents attending various clinics in hospitals and a community sample. A self-administered survey was developed by researchers. The questionnaire was about the subjects’ attitudes toward consanguinity and was divided into two parts: sociocultural and health attitudes. SPSS was used for data entry and analysis. Chi-square, t-test and Pearson correlation were the major statistical procedures. Significant differences were found between consanguineous parents with at least one affected child with an AR genetic disease and the community sample (non-consanguineous parents). Regarding the prevalence of consanguinity, support consanguinity in general, parents want their children to marry a relative and consanguinity is common in their family, significant differences were also found between clinical and community samples. Regarding health attitudes, significant differences between the two samples were found in six out of seven examined variables. A relationship between the rate of consanguinity and the respondent’s education level was found. High level of inbreeding with increasing consanguinity rates is responsible for the high prevalence of inherited AR genetic disorders in the MENA region with subsequent morbidity and mortality.\u003c/em\u003e\u003c/p\u003e","manuscriptTitle":"Attitudes of parents with a child with autosomal recessive disease toward consanguinity","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2024-03-25 08:11:49","doi":"10.21203/rs.3.rs-3987895/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"
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