An-Najah National University 

Faculty of Graduate studies 

 

 

 

Knowledge and attitude toward genetic counseling and 

testing Among parents of children with genetic 

disorder in the West Bank /Palestine 

 

  

 

By  

Falasteen Yaseen 

 

 

 

Supervisor 

Dr. Eman Shawish 

 

 

 

This Thesis is Submitted in Partial Fulfillment of the Requirements 

For  the Degree of  Master of  Public Health, Faculty Of Graduate 

Studies,  An-Najah National University, Nablus / Palestine 

2017 



   II 

 

 

 



   III 

 

 

 اإلىداء

 بسم اهلل الرحمن الرحيم 

 الحمد هلل اواًل واخيرًا 

سنين مرت عمى دخولي  كمية الدراسات العميا واخر المشوار حان بعد الكثير من الجيد 

المبذول لموصول الى اعتاب التخرج من ىذا الصرح العممي الشامخ بأقسامو وموظفيو كال 

بمكانو، سنيني مرت مرور الكرام ولكن ايامي كانت زاخرة باألصدقاء و المعارف والزمالء 

والمدرسين كال لو ذكرياتو الخاصة منقوشة في و جداني وحياتي العممية والمينية ، ال اسعني 

اال إن اتقدم بالشكر الجزيل لكل من ساىم في دعمي  بحرف أو كممة  في مسيرتي التعميمية 

، لكل من ساىم في وصولي لممعرفة العممية والعممية . اجتيدت وقضيت اوقاتي في الوصول 

 ليذه المحظة .

 

 اليكم احبتي عائمتي زوجي وولدي   

 الذين ساندوني بكل مراحل حياتي وما زالو ا

 

 اليكم اىدي ىذه الرسالة

 

 

 



   IV 

 

 

Acknowledgment 

I am very much thankful to my supervisor, Dr. Eman Alshawish for her 

encouragement, guidance and support from the initial to the final level, 

who enabled me to understand and develop the subject. Also I would 

like to thank Al-Najah National University for supporting this work and 

allowing me to conduct my research, and I wish to bay my appreciation 

to all hospitals' departments and nurses and families for their 

cooperation. Finally I offer my regards and blessing to all of those who 

supported me or give me any help especially my family and my husband 
. 

 

 

                                                      

 

 

 

 

 

 

 

 



   V 

 

 

 



   VI 

 

 

Table of Contents 

Number Topic Page 

 Dedication  III 

 Acknowledgement  I V 

 V االقرار 

 Table of content VI 

 Table of Figures I X 

 List of tables X 

 Annexes X I 

 Abbreviations  X I I 

 Abstract  X I I I 

 ب الخالصة 

 Chapter 1: Introduction 1 

1.1 Background  1 

1.1.1 Genetic disorder  1 

1.1.2 Genetic counseling 1 

1.1.3 Genetic testing  2 

1.1.4 Consanguinity  3 

1.2 Thalassemia as successful example 4 

1.3 Significance of the problem 4 

1.3.1 Genetic disorders in Palestine 5 

1.3.2 Reported diseases in Palestine 7 

 Chapter 2: Literature review 8 

2.1 Search strategy and keyword  8 

2.2 Inclusion and exclusion criteria  8 

2.3 Systematic review  9 

2.4 Literature review discussion 10 

2.5 Frame work  15 

 Chapter 3: Methodology 16 

3.1 Introduction  16 

3.2 Study design   16 

3.3 Hypothesis  16 

3.4 Aim And objectives  17 

3.5 Study setting 17 



  VII 

 

 

3.6 Sampling and population 18 

3.6.1 Population  18 

3.6.2 Sampling  18 

3.7 Data collection  18 

3.8 Data analysis  19 

3.8.1 Variable types and definitions 21 

3.9 Validity and Reliability  22 

3.9.1 Piloting  22 

3.9.2 Translation  22 

3.10 Reliability  23 

3.11 Ethical considerations  23 

3.12 Strength and limitation  24 

3.12.1 Strengths  24 

3.12.2 Limitations  24 

3.13 Summary 24 

 Chapter 4: Results 26 

4.1 Introduction  26 

4.2 Sample distribution  26 

4.3 Descriptive  28 

4.3.1 Demographic data  28 

4.3.2 Associated risk factors 32 

4.3.3  Knowledge evaluation 35 

4.3.3.1 Parents‟ knowledge  35 

4.3.3.2 Evaluation and scoring  39 

4.3.4 Parents attitudes  40 

4.4  Inferential statistics  44 

4.4.1 Introduction  44 

4.4.2 Chi square test 44 

4.4.3 Correlation  44 

4.4.4 ANOVA test 44 

4.4.5 Results of Chi square analysis  45 

4.4.6  Number of sick children and knowledge 

and attitudes  

50 

4.4.7 Number of lost children and knowledge 

and attitudes 

51 

4.4.8 Educational level and knowledge  52 

4.4.9 Parents' income  and knowledge 53 

4.5 Summary  

 

 

53 



  VIII 

 

 

 Chapter 5: Discussion 56 

5.1 Introduction  56 

5.2 Socio-Demographic characteristics   56 

5.3 Associated risk factors  57 

5.4 Parent's knowledge  58 

5.5 Parent's attitudes  60 

5.6 Knowledge and attitudes 61 

5.7 Number of sick or lost children and 

attitudes 

65 

5.8 Attitudes towards prenatal testing  66 

5.9 Attitudes towards use the IVF 67 

5.10 Conclusion  67 

5.11 Recommendation  68 

5.12 Summary  69 

 References  72 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 



   IX 

 

 

Table of Figures 

Number figure Page 

Figure (2.1) Systematic review 7 

Figure (2.2) Frame work 12 

Figure (3.1) Distribution 21 

Figure (4.2) Knowledge level 32 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 



   X 

 

 

List of Tables 

Table Number Title Page 

Table (2.1) Key words   6 

Table (3.1) Variable types and definitions 17 

Table (3.2) Stability 19 

Table (4.1) Demographic data 22 

Table (4.2) Associated Risk factors 25 

Table (4.3) Knowledge evaluation  29 

Table (4.4) Knowledge level    32 

Table (4.5) Chi square significant table   36 

Table (4.6) Correlation   40 

Table (4.7) Number of sick children and attitudes  41 

Table (4.8) Number of deceased children and 

attitudes   

42 

Table (4.9) Educational level and attitudes 43 

Table (4.10) Income and  knowledge   44 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 



   XI 

 

 

Annexes 

Number Annex  Page 

1. Questionnaire 80 

2. Tables 87 

3. Chi-square analysis 89 

4. Table of Literature Review    96 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 



  XII 

 

 

Abbreviations 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Abbreviation   Full Name 

DNA Deoxyribonucleic acid 

IVF In Vitro Fertilization  

PMC Palestine Medical Complex 

ANOVA Analysis or variance 

IRB  Institutional Review Board  

MOH Ministry of Health 

SPSS  Statistical Package for the Social Science 

ICU Intensive Care Unit 

PCBS Palestinian Center Bureau of Statistics 

CHD Congenital Heart Defect  



  XIII 

 

 

Knowledge and attitude toward genetic counseling and testing among 

parents of children with genetic disorder in the 

West Bank /Palestine 

By 

Falasteen Yaseen 

Supervisor 

Dr. Eman Shawish 

Abstract 

Introduction: Genetic disorder is a health problem that caused by a defect 

in theindividuals' DNA. In Palestine there is no specific statistics about 

mortality rate of children who suffer from genetic disorders.  

Although, there is a big chance to catch a lot of genetic, because of 

consanguinity rate which exceed (44%) (Hussein, 2014). It is notacable that 

the newcase from the sane family have been increased without any genetic 

counseling or prevention. The insufficiency of public health services 

directed to the prevention of genetic disorders, with the lack of health care 

increase the problem. Therefor, the study aim is to describe parents 

knowledge and attitudes toward genetic counseling and testing and to 

determine if knowledge affect attitudes. 

Methodology: A quantitative descriptive cross sectional study via a 

questionnaire, quiz test (to evaluate knowledge), and likert scale (to 

evaluate attitudes was used in this study, to discover the relationship 

between variables. The sample size was 121 participants who attended the 

two hospitals (Palestine Medical Complex and Al-Najah National Hospital) 

from (Feb\ 2016 to Sep\ 2016).  



  XIV 

 

 

Results: The study showed that there is a significant relationship between 

parents educational level and their knowledge regards genetic disorders (P. 

0.003). The most significant risk factors for genetic disorder were ignoring 

premarital genetic testing for (99.2%) ; consanguineous marriage (71,1%) 

and family history of genetic problem for (55.4%). 

The study found that most of parents of children with genetic problems had 

good knowledge regards genetic disorders (63%), Whereas, the attitudes of 

these parents were positive for a majority of items that measure attitude 

level  (81%for agreed answer). The relationship between knowledge and 

attitudes was positive and research hypothesis regards the effect of 

knowledge on attitude had been accepted. However, here was no 

association between number of children whose affected or lost by genetic 

problems and the parents knowledge and attitudes in this study. 

This study recommended to increase awareness of parents about genetic 

importance of premarital testing which avoid consanguinity and these are 

the golden tool to decrease genetic problem in Palestine. 

 

Key words: knowledge, attitudes, parents, genetic testing, genetic 

counseling, children, disorder. 

 



1 

Chapter 1 

Introduction 

1.1 Background: 

In any pediatric hospital, there are children suffering from a variety of 

illnesses and diseases. This is particularly true for children with chronic 

diseases, which are mainly caused by genetic transmission. However, these 

genetic diseases can be prevented or limited using simple, low-cost 

methods and technologies. These methods are often cheaper and easier to 

implement than treatment, especially since the field of genetic sciences in 

Palestine has advanced greatly, and genetic labs have become more 

available. Additionally, individuals affected by genetic conditions are now 

more likely to seek information about inheritance and risk factors (Harvey 

et al., 2007).  

Before the development of modern genetic technologies, genetic 

counseling was the only option, and health professinals attempted to 

characterize the genetic behavior of diseases based on family history 

(WHO, 2015). 

1.1.1 Genetic disorders: 

A genetic disorder is a health problem that is caused by an abnormal defect 

in the individual's DNA. Abnormalities can be as small as a single mutation 

in just one gene, or they may involve the addition or subtraction of entire 

chromosomes (University of UTAH Health Sciences, 2015). 



   2 

 

 

1.1.2 Genetic counseling: 

Genetic counseling is a service that provides information and advice about 

genetics conditions. These conditions are caused by changes (mutations) in 

known genes, which are usually passed down through a family. It is 

conducted by healthcare professionals who have been specially trained in 

the science of human genetics (a genetic counselor or a clinical geneticist) 

(WHO, 2015). 

Genetic counseling provides the individual or family with information and 

support regarding health concerns that run in their family. Genetic 

counseling may involve the diagnosis of a genetic condition, as well as the 

provision of information and supportive counseling (advice and guidance) 

by a team of health professionals. This enables families and individuals to 

better adjust to the diagnosis. Follow-up counseling is available to ensure 

ongoing support, to review previous information, or to answer new 

questions as they arise (NHS Choices, 2014).  

Individuals who come to see genetic counselors may be people who have a 

disorder themselves and are concerned about their family and vice versa, 

couples with an affected child who wish to plan another pregnancy, couples 

who are planning their first pregnancy and wish to understand the disease 

susceptibility of their future child, as well as couples who are planning a 

pregnancy late in life and want to assess any potential risks. Genetic 

counseling services may be useful at all stages of development. For 

instance, services can be available for infants undergoing screening, 



   3 

 

 

teenagers being tested for Thalassemia genes, or adults assessing their 

predisposition for genetic disorders as they enter their mid-life stage, and 

attempt to make the appropriate lifestyle changes (WHO, 2013). 

1.1.3 Genetic testing: 

Genetic testing is a type of medical test which identifies changes in 

chromosomes, genes, or proteins. The results of a genetic test can confirm 

or rule out a suspected genetic condition, or help determine a person‟s 

chance of developing or passing on a genetic disorder (WHO, 2015). 

Genetic testing is voluntary. Testing has benefits as well as limitations and 

risks; therefore, the decision to be tested is a personal and complex one. A 

geneticist or genetic counselor can help by providing information about the 

pros and cons of the test, and by discussing the social and emotional 

aspects of testing (WHO, 2015). 

Genetic testing is often used for other reasons as well. For example, carrier 

testing can be used to help couples learn if they carry a gene mutation for a 

disorder they might pass on to a child, such as cystic fibrosis, sickle-cell 

anemia, or Tay-Sachs disease. Meanwhile, prenatal screening can be used 

to diagnose some conditions in babies before they are even born, such as 

Down syndrome (WHO, 2013). 

Newborn screening is the most widespread form of genetic testing. 

Newborns are screened for a number of inherited conditions, such as 

phenylketonuria (PKU), cystic fibrosis, sickle cell disease, and others. The 

tests required vary from state to state (WHO, 2013). 



   4 

 

 

1.1.4: Consanguinity: 

Consanguinity, or intermarriage, is defined as the marriage of two relatives, 

second cousins or two who are more closely related (NCHPEG, 2013). 

Consanguineous marriages have been practiced since the early existence of 

modern humans (Tadmori et al., 2009). It is a rooted social trend among 

one-fifth of the world‟s population. This tradition is mostly practiced in the 

Middle East, West Asia and North Africa, as well as among emigrants from 

these communities now residing in North America, Europe and Australia 

(Hamamy, 2012). 

Until recently, consanguinity was widely practiced in several global 

communities, with a variety in rates depending on religion, culture, and 

geography (Tadmori et al., 2009). Arab populations have a long-held 

tradition of consanguinity due to socio-cultural factors. Many Arab 

countries display some of the highest rates of consanguineous marriages in 

the world, especially first cousin marriages which may reach 25-30% of all 

marriages. In some countries like Qatar, Yemen, and UAE, consanguinity 

rates are increasing in the current generation. Research among Arabs and 

worldwide has indicated that consanguinity could influence some 

reproductive health parameters such as postnatal mortality rates, and rates 

of congenital malformations (Tadmori et al., 2009) 



   5 

 

 

1.2 Thalassemia as a successful example: 

Thalassemia or Mediterranean anemia is endemic in almost all Arab 

countries. This is probably due to the historical presence of malaria in the 

region, and the high levels of consanguinity (WHO, 2014). 

In the year 2012, there were 815 Palestinian patients suffering from 

anemia, and 16,000 carrying the genetic trait. The number of Thalassemia 

patients in Palestine before the year 2000 was 45. This number decreased to 

five in 2000, and to zero after 2013 (PCBS, 2014). 

This excellent achievement is related to the application of premarital 

genetic counseling to avoid new cases of Thalassemia. The experience of 

Thalassemia offers strong evidence in support of the effectiveness of 

genetic counseling to prevent or reduce future cases of genetic disorders.  

1.3 Significance of the problem: 

In the West Bank, pediatric wards in governmental and private hospitals 

have little to no statistics about the mortality rate of children suffering from 

genetic disorders. In some occasions, many members from the same family 

have been diagnosed with the same disorder. From the researcher‟s own 

experience as a nurse in the pediatrics suit in the Palestinian Medical 

Council, new children are often born with the same genetic diseases as 

previous siblings and family members, without the families being offered 

any genetic counseling or any prevention tools. 



   6 

 

 

Unfortunately, only few epidemiological population studies were 

conducted to investigate the prevalence of genetic disorders among 

Palestinians (Abu Lebdeh and Teebe, 2010), especially for thalassemic and 

hemophiliac patients (PHIC, 2013). 

On the level of the Arab world, a study was conducted by Ghazi Tadmori 

summarizing data from industrialized countries, which indicated that 

significant genetic diseases or birth defects may affect approximately 3% 

of all pregnancies, account for up to 30% of pediatric hospital admissions, 

and cause about 50% of childhood deaths (Tadmori, 2010). 

1.3.1 Genetic disorders in Palestine: 

As an eastern society where consanguintity marriage is very common, the 

Palestinian society is particulalry prone to genetic disorders (Abu-Libdeh 

and Teebe, 2010). The Palestinian population is characterized by high 

consanguinity rates (about 44%), large family size (5.5 children per 

family), and pregnancies in women over the age of 45. These factors result 

in the high prevalence of genetic disorders among Palestinians (Hussein, 

2014).  

Additionally, insufficient public health services directed to the prevention 

of congenital and genetic disorders, as well as inadequate health care 

before, during, and after pregnancy, especially in low income countries, are 

all factors that increase the chances of genetic disorders among newborn 

children (Al-Gazali, 2006). 



   7 

 

 

Services aiming to limit and control genetic disorders are constrained by 

certain cultural, legal, and religious limitations. Examples include the 

cultural fear of families with genetic diseases being stigmatized within their 

community, and the legal restrictions on selective termination of pregnancy 

of an affected fetus (Al-Gazali, 2006). 

There is a need for easy public access to health resources, including the 

knowledge of the types of human diseases and methods to decrease and 

manage them. Misinformation or insufficient information can affect the 

public‟s impression about the fundamental concepts genomics, while an 

informed public can influence policy makers in the development of 

guidelines, and address the ethical, social and legal issues raised by 

expanding genomic technologies (WHO, 2015). 

Sometimes, health professionals are unable to accurately diagnose a genetic 

condition. When this happens, physicians will say that a patient has an 

undiagnosed or rare genetic condition (NIH, 2011). 

There is an advanced genetic lab in Al-maqased Hospital, where very rare 

genetic disorders are discovered. The genetic disease specialists 

summerized genetic disorders among Palestinians in the book “Genetic 

Disorders Among Arab Population” (2010). These diseases and disorders 

briefly are: 

“Hemoglobinobathy, Familial Meditranian Fever, Cystic Fibrosis, 

Phenylketonuria, Bardet-Biedle Syndrom, Meckel Syndrom, Lysosomal 

Disorder, Familial Hydrocephalus, Genetic Disorders Causing Blindness, 



   8 

 

 

Glansmann‟s Tthrompocytopenia, Nesidioblastosis (pancriatic disorder), 

Inborn Errors of Metabolism (46 defferent metabolic diseases), Cancer, 

Osteogenesis imperfecta” (Abu-Libdeh and Teebe, 2010). 

1.3.2 New diseases reported among Palestinians:  

Interestingly, there has been a number of new genetic diseases and 

disorders reported among Palestinians. These include: 

“Limb/Pelvis Hypoplasia/aplasia Syndrom, Microcephaly with Normal 

Intelligence, Microfhthalmia, Disordered Pigmentation, Spastic Paraplagia, 

Hypogonadotropic Hypogonadism with Mental Retardation and Skeletal 

Abnormalities. Majeed Syndrom (congenetal deserthropiotic anemia type 

(1)) with chronic recurrent ostiomyelitis and sweet‟s syndrom” (Abu-

Libdeh and Teebe, 2010). 

From the resaercher‟s point of view, these diseases deserve to be studied 

from several aspects. It is especillay important to become familiar with the 

knowledge and attitudes of parents and caretakers of the sick children with 

genetic problem. 

In fact, genetic disorders are a big social, health, and economic problem. It 

is continuously increasing, and patients‟ families are often in the center of 

the problem, as well as the center of the solution. It is therefore important 

to become familiar with their knowledge and attitudes toward genetic 

disorders. 



   9 

 

 

Chapter 2 

Literature Review 

2.1. Search strategy and key words: 

Science Direct, PUBMED, Google Scholar, and HINARI are all databases 

that were used to research the body of literature on the topic, and to write 

the literature review.  

The keywords used in the research were: knowledge, attitude toward genetic 

counseling, testing, awareness about genetic counseling and testing, 

perception toward genetic counseling, testing, family, parents, relatives, 

children, genetic diseases, genetic counseling, and genetic problems. Table 

(1) shows how these keywords were combined in the research. 

  Table (2.1): Key words: 

No Term Combined 

with 

1 Knowledge OR attitude OR awareness OR 

perception. 

 

 

And 2 Genetic counseling OR genetic testing OR 

genetic screening. 

3 Family OR mothers OR parents OR relatives. 

4 Genetic disorders OR genetic disease OR genetic 

problems. 

  2.2. Inclusion and exclusion criteria of articles: 

A systematic review was conducted in order to capture the most relative 

articles to this research. Both qualitative and quantitative studies were 

included; some articles were excluded after reviewing the abstract, while 



   10 

 

 

others were excluded after reviewing the entire article. The systematic 

review targeted articles published between 2005 and 2017. However, 

some articles were included in the literature review despite being 

published before 2005, as they were valuable and closely related to the 

topic. 

2.3. Systematic review: 

The following diagram (figure 1) showcases how this systematic review 

of the literature was conducted. After applying the inclusion and exclusion 

criteria, a total of 23 articles were selected for the review. 

 

  

 

 

 

 

 

 

 

 

 

Figure (2.1): The systematic review 

Google 

Scholar 

Pubmed Hinari Science 

Direct 

Initial results 6398 200 642 513 

included after 

reviewing the 

title 

12 5 

3 4 

234 13 

15 

200 32 

10 6 After reviewing 

full article 

20 After reviewing 

the abstract 

Total: 23 



   11 

 

 

2.4. Literature Review Discussion: 

2.4.1. Knowledge and attitudes about genetic testing and genetic 

counseling: 

A knowledge, attitudes, and practice (KAP) study was conducted in the 

Kingdom of Saudi Arabia (KSA) in 2006 to assess knowledge of and 

attitudes toward premarital counseling. The study revealed that most 

subjects supported the application of premarital screening in KSA (Alam, 

2006). Two years later, an interventional study (educational program) 

assessed the knowledge on the topic before and after the implementation 

of the educational campaign. The study found that knowledge about 

genetic counseling and testing was lower before the campaign, and 

significantly increased after the educational program (Ibrahim, et al. 

2011). 

Another cross-sectional study in the Netherlands used a questionnaire and 

a DNA test to conclude that older and lower-educated patients had less 

knowledge about genetic issues. Meanwhile, attitudes toward genetic 

testing and counseling were rather positive, and higher levels of genetic 

knowledge were associated with a more positive attitude toward genetic 

counseling (Morren and Rijken, 2006).  

Another knowledge and attitude follow up study was conducted in the 

Netherlands over the span of two years, from 2002 to 2004. The study was 

done among patients of asthma, diabetes mellitus, and cardiovascular 

disease. Perceived knowledge on DNA-testing did not increase over the 



   12 

 

 

span of the study, and attitudes toward genetic testing also were rather 

consistent. Little medical genetic knowledge as opposed to social genetic 

knowledge seems to be a predictor for a more reserved attitude toward 

genetic testing (Calsbeek et al., 2007). 

Another knowledge and attitude study conducted in Ohio (US) in 2014 

among parents of children with congenital heart defect showed that 73.8% 

of parents had accurate knowledge about the disease. There was a 

significant positive association between the accuracy of parents‟ 

knowledge, and their educational level and household income. Attitudes 

toward the health concerns of genetic testing were favorable, with about 

57% of parents agreeing that genetic testing should be used for managing 

health care and finding cures for diseases (Fitzgerald-Butt et al., 2014).  

Finally, a study was done in Australia in 2013 among Parkinson‟s disease 

patients to evaluate their knowledge and attitudes toward genetic testing. 

The level of knowledge was relatively low (37% accurate responses), but 

attitudes were positive. The vast majority of patients (97%) supported 

diagnostic testing, while 90% would undertake a genetic test themselves. 

Support for predictive tests was lower (78%), and prenatal genetic testing 

had the least support (58%) (Scuffham et al., 2013). 

2.4.2 Attitudes of families which have experienced genetic problems: 

A study in Finland by Boardman (2014) revealed that the Finnish 

population in general, and family members of patients with genetic 

disorders in particular, have a favorable attitude toward genetic testing 



   13 

 

 

(Hietala et al., 2000). In addition, a communication study done in America 

in 2007 showed that subjects who have a known history of genetic 

mutations communicated positively about genetic issues during counseling 

and testing (Ellington and Maxwel, 2006).  

A study about cystic fibrosis (CF) found that the majority of affected 

families reject selective abortion for CF, and that many will curtail 

childbearing rather than use prenatal diagnosis (Wertz and Janes, 1992). 

The University of Central Lancashire in 1997 in UK studied the attitudes of 

deaf adults toward genetic testing for hereditary deafness. Participants had 

negative attitudes toward genetic testing, and said that they would rather 

have deaf children (Middleton and Hewison, 1998). This seems to 

contradict the findings of a study done in the USA in 2000, which showed 

that there was strong interest by families in genetic testing for deafness 

(Brunger et al., 2000). It also contradicts the results from the study in the 

Netherlands which examined the genetic knowledge and attitudes of 

patients with chronic diseases, and showed that attitudes toward genetic 

testing were rather positive, especially among younger and higher educated 

patients (Morren and Rijken, 2006). 

2.4.3 Parents’ attitudes toward prenatal testing and abortion: 

All previous studies were conducted among families, however, in 2015, a  

comparative study was conducted among university students in Israel. 

Using Likert scale, the study compared students‟ attitudes towards genetic 

testing based on three aspects: their gender, their field of study, and their 



   14 

 

 

religious affiliation. The most influential factor was found to be the 

religious affiliation of the student. Religious students, especially those who 

do not study life sciences (LS), place less trust in genetic tests than secular 

students and students studying LS. Students of LS show more critical 

thinking towards genetic testing than others. Gender was the least 

influential factor, showing a mixed trend of influence (Siani and Assaraf, 

2015) 

A study about prenatal testing used qualitative interviews and found that 

for families living with a case of spinal muscular atrophy, decisions against 

selective termination of pregnancy after prenatal testing were made by 

family members themselves (Boardman, 2014). However, there was high 

acceptability for prenatal diagnosis in b-Thalassemia afflicted families, and 

all couples with affected fetuses opted for abortion (Thawabteh et al., 

2005). 

2.4.4 In Vitro Fertilization (IVF) and genetic testing: 

A study was conducted in the United Kingdom about pre-implantation 

diagnosis and other reproductive options in IVF to study attitudes of male 

and female carriers of recessive disorders. The majority of participants did 

not feel that pre-implementation genetic testing and diagnosis was the most 

useful option in their situation, especially for those who would not consider 

a termination (Snowdon and Green, 2000). 

A German study analyzed the results of chromosome analysis and genetic 

counseling of infertile couples referred to genetic testing before undergoing 



   15 

 

 

intracytoplasmic sperm injection. The study found a high rate of 

chromosomal abnormalities in female patients (Kaiser and Kiesel, 1997). 

2.4.5 Genetic disorders: prevalence and statistics. 

Ghazi Tadmori mentioned that there are around 752 genetic diseases in the 

Arab world. He further explained the data from industrialized countries, 

which showed that significant genetic diseases or birth defects may affect 

approximately 3% of all pregnancies, account for up to 30% of pediatric 

hospital admissions, and cause about 50% of childhood deaths (Tadmori, 

2010).  

Among the Palestinian population, Dr. Bassam Abu. Lebdeh and Dr. 

Ahmad Teebe highlighted about 98 types of genetic disorders, some of 

which are newly discovered mutations. They recommended increasing 

research and public education programs around issues of genetic diseases 

and genetic testing (Abu-Libdeh and Teebe, 2010). 

2.4.6 Psychology and genetic counseling: 

Elina Rantanen researched the literature to understand the expectations and 

concerns around genetic testing and counseling. The ideal genetic 

counseling seems to consist of information about the test, the condition, 

and the risks and their management. It also offers support in adjusting to 

this information, and in decision-making process concerning the test and its 

result (Rantanen, 2014).  

To support these conclusions, another literature review study explored the 

psychological impact of genetic testing. The study found that highly 



   16 

 

 

specific information provided by genetic testing can empower both 

clinicians and patients to develop behavioral strategies with the greatest 

impact on reducing disease morbidity and mortality (Tercyak et al., 2002). 

A meta-analytic review to discover the impact of genetic counseling found 

that genetic counseling significantly decreased anxiety (Meiser and 

Halliday, 2002). 

  2.4.7 The situation of genetic counseling and genetic testing: 

Kocha and Svendsenb wrote about genetic counseling as imperative in 

disease prevention. They suggested that “solutions provide the framework 

within which certain problems can be stated (Kocha and Svendsenb, 2005). 

To evaluate genetic testing and counseling, a study conducted in the USA 

in 2004 found that traditional practice philosophies that have been 

longstanding in genetic counseling are being re-conceptualized to 

accommodate the shifts in genetics research brought about by the Human 

Genome Project. For future directions they recommended the 

implementation of more sophisticated research methods to overcome some 

of the existing limitations in the literature (Wanga et al., 2004).  

2.5 Framework: 

The framework was conceptualized according to the literature review, and 

helped the researcher develop the questionnaire. Figure 2 shows a flow 

chart of the development of the framework. 



   17 

 

 

 

 

 

 

 

 

 

  

 

 

 

 

 

 

 Figure (2.2): Framework 

 

 

Number 

of dead 

children 

Number 

of sick 

children 

Parents‟ educational 

level 

 

Attitudes 

Good antenatal care 

and education 

Income Family 

history of 

genetic 

disorder 

Parents‟ age 

 

Knowledge 

Occupation 



   18 

 

 

Chapter 3 

Methodology 

3.1 Introduction 

This chapter describes the research and the aspects of the methodology, it 

identifies population, design, setting, data collection and analysis, validity 

and ethical considerations. 

3.2 Study Design 

A quantitative descriptive cross-sectional survey was used in this study in 

the form of a questionnaire. This design is the most appropriate to study 

knowledge and attitudes, and to investigate the relationships between 

different variables. The questionnaire covered all variables of the research, 

as shown in annex (1). 

3.3 Hypothesis 

1.Parents with high knowledge about genetic testing and counseling are 

expected to have positive attitudes toward it, and be more likely to use it. 

2. Parents with sick children have more knowledge, and a more positive 

attitude toward genetic counseling.  

3. Parents who have lost one or more children due to a genetic problem are 

more knowledgeable, and have more positive attitudes toward genetic 

counseling. 

 

 



   19 

 

 

3.4 Aim and objectives:  

3.4.1 Aim: 

To determine parents‟ knowledge and attitudes toward genetic counseling 

and testing, and to determine if knowledge affects their attitudes. 

3.4.2Specific objectives: 

1.To assess parents‟ knowledge about genetic counseling and genetic 

testing. 

2.To survey the associated risk factors for the emergence of genetic 

diseases. 

3.To evaluate the effect of demographic data on parents‟ level of 

knowledge.  

4.To explore parents‟ attitudes toward genetic counseling. 

5.To investigate the relationship between the level of parents‟ level of 

knowledge about genetic testing and counseling, with their attitudes 

towards genetic counseling.  

6.To compare the levels of knowledge of parents who have lost children 

due to genetic conditions or who have children diagnosed with genetic 

conditions, and parents who do not have these experiences. 

3.5 Setting: 

The study was conducted in two hospitals in the West Bank. The first 

hospital is Al-Najah National Hospital in Nablus (private hospital), 



   20 

 

 

particularly in the pediatric ward and pediatric genetic clinic. The second is 

the Palestine Medical Complex (PMC) in Ramallah (governmental 

hospital), in the pediatric suite (Neonate ICU, Pediatric ICU and Pediatric 

ward) and pediatric clinic. Both hospitals are assumed to cover cases from 

all cities of the West Bank because they receive referrals from all of 

governmental and private hospitals. 

3.6 Sampling and Population 

3.6.1 Population 

The population is all families of children who were admitted to pediatric 

suites in Al-Najah Hospital and PMC as cases of genetic disorders from the 

15
th
 of February to the 15

th
 of September 2016. 

3.6.2. Sampling and Sample size 

Sampling Method 

This study used a convenience sampling method. All cases present in both 

hospitals during the research period (15\2\2016 – 15\9\ 2016) were 

included. The researcher visited both hospitals to collect data. If the same 

family happened to have more than one file, the researcher considered it as 

a single case. 

Sample Size 

Subjects from the consecutive sample were a total of (121) from both 

hospitals. There was (140) subjects from the convenient sample, (19) of 

them were excluded, (10) subjects were excluded because they were 



   21 

 

 

recurrent admission cases, and (9) subjects were brothers of the same 

family. 

3.7 Data Collection  

The data collection period was from 15\2\2016 to 15\9\2016 using a 

questionnaire with four sections: 

1.Demographic data. 

2.Potential risk factors: this section explains the risk factors for having 

genetic disease. 

3.The knowledge section: this section is essentially a quiz that aims to 

evaluate the awareness of parents. There is no literature discussing a cut-off 

point to determine parents‟ knowledge levels. Therefore, results were 

summed into three groups (high, moderate and low). Details are given in 

page 36.  

4. The attitudes section: this section is used to evaluate parents‟ attitudes 

toward genetic consulting and genetic testing. It also aims to understand 

what future plans parents have in order to avoid having more children with 

genetic conditions. A Likert scale questionnaire was used with five scales: 

(strongly agree, agree, I don‟t know, disagree, strongly disagree). 

The researcher and supervisor built the questionnaire based on the literature 

review, with help from many experts in research and the field of genetics. 

To fill the questionnaire, the researcher met the families, asked the mother 

or father the different questions, and documented their answers. 



   22 

 

 

3.8 Data analysis 

The statistical analysis software, SPSS version 19, was used to analyze the 

data.  

The questionnaire included the following sections: 

1.Independent variables: education, address, age, number of lost children, 

number of sick children, income and knowledge. 

2.Dependent variables: parents‟ attitudes toward genetic testing and 

counseling. 

Parents‟ knowledge had been evaluated by a quiz, the quiz had ten multiple 

choice questions, and a total of ten marks, each correct answer equals one 

mark, with a scoring scale ranging from 0 to 10. Scores were classified into 

three categories: good, moderate, and weak knowledge. 

Parents attitudes were studied using a Likert scale questionnaire, which 

used five responses to answer questions. These were: strongly agree, agree, 

undecided, disagree, and strongly disagree. Positive attitudes were 

indicated by the answers: agree and strongly agree, while negative attitudes 

were indicated by disagree and strongly disagree. 

Knowledge and attitudes relationship studied by (chi square) and the 

significant results studied by correlation to determine the type of 

relationship. 

Associated factors had evaluated just by frequency.    

  



   23 

 

 

  3.8.1 Variable types and definitions: 

  Table (3.1) variable types and definitions: 

Variable Type of 

variable 

Conceptual  

definition 

Operational 

 definition 

Genetic 

disorder 

Categorical 

Nominal 

Is an illness 

caused by one or 

more 

abnormalities in 

the genome, 

especially a 

condition that is 

present from birth 

(congenital) 

(Oxford, 2015). 

A disease or 

deformity caused by 

genetic issue 

(Ellington et al., 

2006). 



   24 

 

 

Knowledge Categorical 

Nominal 

Facts, information 

and skills 

acquired through 

experience, or 

education, the 

theoretical or 

practical 

understanding of 

a subject  

(Oxford, 2015). 

A score of answers 

of parents on many 

questions about 

genetic counseling 

and testing 

 (Ibrahim et al., 

2011). 

Attitude Categorical 

Nominal 

A settled thinking 

or feeling about 

something 

 (Oxford, 2015). 

If you accept or 

refuse genetic testing 

and counseling and 

your conviction 

toward it (Ibrahim et 

al., 2011). 

Counseling Categorical 

Nominal 

The provision or 

professional 

assistance or 

guidance in 

resolving personal 

or psychological 

problems 

 (Oxford, 2015). 

 

Asking a consult or 

advice from a 

specialist (Ellington 

et al., 2006). 



   25 

 

 

Genetic 

testing 

Categorical 

Nominal 

The condition of 

being of the same 

blood; 

relationship by 

descent from a 

common ancestor; 

blood-relationship 

(Oxford, 2015). 

DNA exam to avoid 

genetic disorder 

(Ellington et al., 

2006). 

Parents Categorical 

Nominal 

A person’s 

mother or father  

(Oxford, 2015). 

Mothers and fathers 

of children with 

genetic disorders 

(Ellington et al., 

2006). 

Consanguinity Categorical 

Ordinal 

Relationship by 

blood or by a 

common ancestor 

(Oxford, 2015). 

Consanguinity, or 

intermarriage, is 

defined as the 

marriage of two 

relatives, second 

cousins or more 

closely related 

individuals 

(NCHPE,G2013). 



   26 

 

 

3.9 Validity 

3.9.1 Piloting: 

The questionnaire was given to seven experts in the genetic research field 

to critique it and provide their suggestions. All feedback and comments 

were incorporated into the final questionnaire design. A pilot study was 

then conducted with ten families who have one or more children with a 

genetic disorder. The goal of the pilot study was to evaluate the 

questionnaire and to seek the families‟ feedback. These ten families were 

chosen randomly, five from PMC and the other five from Al-Najah 

National Hospital. No changes were made to the questionnaire‟s design as 

a result of the pilot study. The pilot sample was included in the main 

sample, and both were analyzed together. 

3.9.2 Translation 

The questionnaire was translated from Arabic to English by a specialist in 

the English language. Another specialist then translated it to Arabic without 

any significant differences. Lastly, a doctor specialized in genetics 

reviewed the final questionnaire, and gave positive comments.  

 3.10 Reliability 

Cronbach‟s alpha is a measure of internal consistency, that is, how closely 

related a set of items are as a group. It is not a statistical test, but a 

coefficient of reliability (or consistency). It can be written as a function of 



   27 

 

 

the number of test items and the average inter-correlation among the items 

(IDRE, 2016) 

Stability of the scale, or the internal consistency, was calculated using 

Cronbach‟s alpha coefficient (Cronbach Alpha). The stability coefficient 

was 0.72, which means the tool of the study has good stability. 

Case Processing Summary 

 

       No. % 

Cases       Valid         119 98.3 

    Excluded         2 1.7 

      Total       121 100.0 

Table (3.2): Stability  

3.11 Ethical considerations 

The researcher obtained the permission of Al-Najah University‟s 

Institutional Review Board (IRB) before starting this study. Additionally, 

the thesis supervisor oversaw the development and implementation of all 

other steps throughout the research. Permission to conduct this study was 

also obtained from the directors of both the Palestine Medical Complex, 

and Al-Najah University Hospital. 

The subjects were each given a consent form to sign prior to starting the 

questionnaire. All subjects had the option to withdraw from the study at 



   28 

 

 

any point they wanted. In addition, no subject was obliged to provide their 

name or any piece of private information. Protecting the privacy of the 

subjects was taken into consideration in all steps of the data collection and 

analysis process. 

The completed questionnaires and any information on the subjects are 

carefully kept in the researcher‟s office. The only people with access to this 

data are the researcher and the supervisor; however, they do not have the 

right to publish any of the subjects‟ private information. 

3.12  strengths and limitation 

3.12.1 Strengths of the study 

1.Palestinian researchers rarely explore this topic, so it is still a relatively 

young research field. 

2.This study is unique because it deals with parents of sick children. 

3.This study will highlight the most important factors that help improve 

parents‟ knowledge about genetic counseling and testing. 

3.12.1 Limitations of the study 

1.Patients of children with physical deformities due to genetic conditions 

could not be included, as they usually visit physiotherapy centers not 

hospitals.  

2.Geographic limitations: the study was conducted in two hospitals only. 

3.Small sample size. 

3.13 Summary 



   29 

 

 

The main method of this research was a quantitative, descriptive, cross-

sectional survey. This method was the most suitable to achieve the aim of 

this study, which was to determine parents‟ knowledge and attitudes toward 

genetic counseling and testing, and if knowledge affects attitudes. 

The study was conducted in two hospitals: the first is governmental (PMC), 

and the other is private (AL- Najah National Hospital). A questionnaire 

was used to collect data from 15\2\2016 to 15\9\2016, the data was then 

analyzed using SPSS version 19. Ethical research standards were followed 

and taken into consideration.  

Knowledge was measured by a quiz and attitudes by Likert scale. The 

relationship between knowledge and attitudes was measured using chi 

squire  



   30 

 

 

Chapter 4 

Results 

4.1. Introduction: 

Data from the descriptive cross-sectional study was analyzed using one-

way ANOVA to assess the relationships and correlations between 

dependent and independent variables. 

The first section of the questionnaire collected demographic data, which 

was then analyzed as descriptive data, and the variables treated as 

independent variables. Variables from the second section were also 

considered independent. These included causes and main risk factors of 

genetic problems. The third section was essentially a quiz to evaluate 

parents‟ knowledge, while the fourth section was a Likert scale used to 

discover parent‟ attitudes toward genetic testing and counseling. SPSS 

version 19 was used to analyze the data. The filter question “How many 

children with genetic disorders do you have?” helped in analyzing the data. 

ANOVA as a parametric test. 

 

 

 

 

 

 



   31 

 

 

4.2 Sample distribution:  

As figure 3 shows, the sample is normally distributed so it is suitable to use  

 

Figure (3.1): Sample distribution 

4.3 Descriptive statistics 

 4.3.1 Demographic data:  

 Table (4.1): Demographic data: 

Demographic Data 

Variables 

 
No. % 

1.Hospital 
P MC 42 35 

A  l-Najah 79 65 

2.Occupation 
City 37 30.6 

Village 59 48.8 



   32 

 

 

Camp 18 14.9 

Bedouin 7 5.8 

3.Gender 
Male 30 25 

female 91 75 

4.Age 

≤ 20 years old 2 1.7 

21-30 years 54 44.6 

40-31years 52 43.0 

≥ 40 years old 13 10.7 

5.Educational level 

Primary school 8 6.6 

Middle school 30 24.8 

Tawjihi (Secondary) 34 28.1 

Diploma 17 14.0 

Higher academia 32 
26.4 

 

6.Work 
Employed 54 44.6 

Unemployed 67 55.4 

7.Income 

≤ 1500 19 15.7 

1500- 2500 22 18.2 

2500- 3500 38 31.4 

3500- 4000 33 27.3 

> 4000 9 7.4 

8.Number of children 

with genetic problem 

One child 96 79.3 

Two children 23 19.0 



   33 

 

 

Demographic data was collected using ten questions in the survey. The 

purpose of collecting this data is to discover if different demographic 

factors enhances parents‟ knowledge and attitudes (table 4). 

 

Three children 2 1.7 

9.Genetic problem 

Heart defect 10 8.3 

Diabetic 14 11.6 

Neurology 18 14.9 

Metabolic disorder 34 28.1 

Hemophilia 8 6.6 

Digestive 19 15.7 

Dermal 7 5.8 

Immunity 8 6.6 

Skeletal 3 2.5 

10.Lost a child or children 

or child 

Yes 35 28.9 

No 86 71.1 

11.Number of children 

lost 

One 27 77.1 

Two 4 11.4 

Three 2 5.7 

Four 0 0 

Five 0 0 

Six 2 5.7 



   34 

 

 

The first question was used to indicate the distribution of subjects between 

the two hospitals. 35% of subjects (n=42) were in PMC, and 65% (n=79) 

were in Al-Najah National Hospital. Additionally, 75% (n=91) of subjects 

were females (mothers) and 25% (n=30) were males (fathers). This is 

because individuals accompanying patients in pediatric wards tend to be 

women, particularly the mothers of the patients. 

Near the half of subjects (48.8%, n=59) lived in villages, while 30% (n=37) 

lived in cities, 14.9% (n=18) in camps, and 5.8% (n=7) were Bedouins 

nomads. The age of these parents ranged from 16 to 45 years old. Out of 

the total sample, 1.7% of parents (n=2) were 20 years old or younger, most 

of them (44.6%, n=54) were in the 21-30 age group, around 43% (n=52) 

were in the 31-40 age group, and only 10.7% (n=13) were older than 40 

years old.  

This study paid particular attention on the impact of the educational level 

of parents on their knowledge and attitudes toward genetic counseling and 

testing. About one third of subjects had low levels of educational, not 

exceeding the 12
th
 grade (secondary education or Tawjihi). Out of these 

parents, 6.6% (n= 8) have only finished primary education, 24.8% (n=30) 

have only finished middle school, while 28.1% (n=34) completed 

secondary school (Tawjihi). As for the subjects with education beyond the 

secondary school level, 14% (n=17) completed a diploma program, while 

26.4% (n=32) had higher academic education. 



   35 

 

 

It was also important to investigate the influence income has on knowledge 

and attitudes, therefore income data was collected. In this sample, 15.7% 

(n=19) of families lived on very low income (less than 1500 shekels a 

month). These families are considered to be living below the Palestinian 

poverty line. About 18.2% (n=22) were in better conditions, and had an 

income between 1500-2500 shekel a month. 31.4% of participants (n=38) 

had an income of 2500-3500 shekel a month, and 27.3% (n=33) had an 

income of 3500-4000 shekels, which is considered a middle income level. 

However, only 7.4% of subjects (n=9) made what‟s considered a good 

income level, with more than 4000 shekel a month. Over half of the 

participants (55.4%, n=67) had a job, while 44.6% (n=54) did not. This is 

because the majority of subjects were mothers 75% (n=91), who are often 

unemployed. 

Families were also asked about the number of children suffering from 

genetic disorder. This was done to study if a complex problem affects the 

knowledge and attitude of parents. Most parents (79.3% n=96) had one 

affected child, 19% (n=23) had two children, and only 1.7% (n=2) had the 

maximum number of three children. The genetic diseases the patients 

suffered from were classified according to body systems as: congenital 

cardiac problems (8.3%, n=10), diabetes (11.6%, n=14), neurology (14.9%, 

n=18), metabolic disorders (28.1%, n=34) which are considered the most 

common in Palestine, hemophilia (6.6%, n=8), gastrointestinal (15.7%, 

(n=19), dermal problems (5.8%, n=7), immune system problems (6.6%, 



   36 

 

 

n=8), and skeletal problems (2.5%, n=3). Skeletal problems were the least 

common genetic problems. 

Among these families, 28.9% (n=35) have lost children due to the same 

genetic problem while 71.1% (n=86) did not. Most families who lost 

children lost one child (77.1%, n=27), 11.4% (n=4) lost two, 5.7% (n=2) 

lost three children, and 5.7% (n=2) lost six children. 

 
4.3.2 Associated risk factors for genetic disorder: 
Table (4.2): associated risk factors for genetic disorders 

Associated risk factors 

Variables N % 

1.Mother age on marriage 20 years or less 78 64.5 

21-30 years 41 33.9 

40-31years 2 1.7 

40 years or more 0 0 

2. Mother age when have  

The first baby 

  

  

20 years or less 43 35.5 

21-30 years 76 62.8 

40-31years 2 1.7 

40 years or more 0 0 

3.Consanguineous 

marriage 

Yes 86 71.1 

No 35 28.9 

4.Level of consanguinity First degree 34 39.5 

Second degree 40 46.5 

Third 12 14.0 



   37 

 

 

5.Genetic test before 

 marriage 

Yes 1 0.8 

No 120 99.2 

6.a The result Positive 1 100 

Negative 0 0 

7.Genetic problem with 

Relatives 

Yes 67 55.4 

No 54 44.6 

Heart defect 6 9.0 

Diabetic 7 10.4 

Neurology 11 16.4 

Metabolic 16 23.9 

Hemophilia 7 10.4 

Digestive 9 13.4 

Dermal 7 10.4 

Immunity 4 6.0 

Skeletal 0 0 

8.Do you live in an 

 industrial Country? 

Yes 8 6.6 

No 113 93.4 

9.Did the mother do a  

detailed ultrasound? 

Yes 65 53.7 

No 56 46.3 

10.A Gestational age on 

 detailed ultrasound 

  

Less than 4  

months 

5 7.7 

4months or 

 more  

60 92.3 

 



   38 

 

 

11.Did you receive  

information about genetic 

counseling and genetic 

problems?  

Yes 66 54.5 

No 55 45.5 

12.A The source of 

 information 

A health center 29 43.9 

Social media 22 33.3 

school 7 10.6 

The family 1 1.5 

A clerk 0 0 

Health lecture 5 7.6 

The people  

around 

2 3.0 

This study wanted to investigate the main associated risk factors leading to 

genetic problems in Palestine, especially under the common culture of 

consanguineous marriage. A variety of associated factors were explored 

using ten questions in the survey (annex 1) and analyzed as shown in table  

(4.2). 

Despite the well-known high levels of consanguineous marriages in 

Palestine, only one of the subjects (0.8%) underwent a genetic test before 

marriage, while 99.2% (n=120) did not. This is the most important 

association for genetic problems. Additionally, 55.4% (n=67) of the 

subjects had a family history of genetic disorders.  



   39 

 

 

Genetic disorders of subjects relatives were classified into the same 

categories as those of the children. However, the percentages differ as 

follows: congenital cardiac problems (9%, n=6), diabetes (10.4%, n=7), 

neurology (16.4%, n=11), metabolic disorders (23.9%, n=16) which are 

considered the most common in Palestine, hemophilia (10.4%, n=7), 

gastrointestinal (13.4%, n=9), dermal problems (10.4%, n=7) and immune 

system problems (6%, n=4). None of the relatives had skeletal problems. It 

is important to note that the distribution of genetic problems among 

relatives is similar proportionally to the distribution of problems among the 

sick children 

Consanguinity was a common cause of genetic disorders, this was clear in 

this study, where more than two thirds of couples (71%, n=86) were 

relatives, and only 29% (n=35) were not. In addition, 39.5% (n=34) of 

couples had first degree marriages, 46% (n=40) of consanguineous 

marriages were second degree, and 14% (n=12) were third degree 

consanguinity. 

Another associated factor investigates is the mother‟s age at marriage. Most 

mothers (64.5%, n=78) got married at 20 years younger, 33.9% (n=41) got 

married at ages between 21-30 years , and just 1.7% (n=2) got married 

between 31-40 years of age. The first child was born at the age of 20 or 

younger for 35.5% (n=43) of mothers, while most of them (62.8%, n=76) 

gave birth to the first child between 21-30 years of age. 



   40 

 

 

Industrial areas may affect human genes and lead to creating genetic 

mutation, therefore subjects were asked about whether they lived in 

industrial areas or not. The answer of 6.6% (n=8) of them was yes, and 

93.4% (n=113) answered no. However, it cannot be ignored that Palestine 

is not an industrialized country, and that the presence of heavily  

industrialized areas is scarce. 

Another important associated factor in protecting children from advanced 

genetic problems is lack of antenatal care. Early diagnoses of genetic 

conditions can increase the opportunity of effective therapy. A detailed 

ultrasound is an advanced eco test done to examine the fetus‟s organs. Half 

of the mothers in this study (53.7% n=65) had this test done, while 46.3% 

(n=56) did not. Mothers did the test in different gestational ages, 7.7% 

(n=5) did it before the gestational age of 4 months, and 92.3% (n=60) did it 

after the gestational age of 4 months. 

Health education is also very important for reproductive health, and when 

the subjects were asked whether they received any health education, 54.5% 

(n=66) answered with yes, and 45.5% (n=55) said that they did not receive 

any health education. Sources of education were various, and often not 

valid or professional. Only 43% (n=29) of families received education from 

health centers, 33.3% (n=22) from social media, and 10.6% (n=7) 

remembered information from school. Family was a source of information 

for 1.5% (n=1) of subjects, health lectures were a source for 7.5% (n=5), 

and 3% (n=2) of subjects used other people around them as sources. 



   41 

 

 

4.3.3 Knowledge evaluation:  

4.3.3.1 Parents’ knowledge: 

This section covers the process and results of the evaluation of parents‟ 

knowledge about genetic counseling. It is essentially a quiz from which the 

knowledge was assessed. The quiz had ten multiple choice questions, and a 

total of ten marks (table 4.3). 

Table (4.3): knowledge Evaluation   

Knowledge evaluation 

Question Answers N   % 

1. The meaning of 

genetic testing: 

Analyze the genes of the 

 Mother and Father 

31 25.6 

2. Analyze DNA to determine a 

genetic problem 

21 17.4 

3.Discover the chromosome of 

defected Genes 

13 10.7 

4. All of the above 56 46.3 

 2.the method of 

transmission of genetic 

disease is 

1.genes 105 86.8 

2.infection by touch 1 .8 

3.contaminated air and water 1 .8 

4.couldnt be transmitted 

 

14 11.6 



   42 

 

 

3. The main purpose of 

genetic counseling is: 

1. decrease the cases of  

genetic problems in the Society 

68 56.2 

2. terminate the pregnancy of 

defected fetus 

13 10.7 

3. treat children of genetic 

 Problem 

 

40 33.1 

4. Most suitable time 

for genetic counseling   

1. when planning for pregnancy 69 57.0 

2.the first trimester of 

pregnancy 

39 32.2 

3. the last trimester of 

pregnancy 

0 0 

4. directly after delivery 13 10.7 

5. Genetic problem 

 could be Decreased 

1.Yes 99 81.8 

2. No 22 18.2 

6. Consanguineous 

 marriage may increase 

genetic problem 

1. Yes 120 99.2 

2.No 1 0.8 

 

7. The responsibility of 

transmission 

1.Both mother's and father's 

 genes 

103 85.1 



   43 

 

 

Question (1) was about the “meaning of genetic testing.” The breakdown 

for the first question was as follows: analyzing the genes of the mother and 

father (25.6%, n=31), analyzing DNA to determine a genetic problem 

(17.4%, n=21), discovering the chromosome of defected genes (10.7%, 

n=13), or all of the above, which is the correct answer (46.3%, n=56). 

of genetic problem 

is due to: 

2.Just mother's genes 10 8.3 

3.Just father's genes 8 6.6 

8.Genetic counseling is 

important : 

 

1. In the first pregnancy 51 42.1 

2.In every pregnancy 68 56.2 

3. Not important at all 2 1.7 

9.The most prior 

 Relatives to analyze 

DNA to determine the 

problem of the baby are 

1.Child,s mother and father 109 90.1 

 2.His grand parents 10 8.3 

3.Cousins 2 1.7 

4.No body  0 0 

10.Genetic counseling 

before marriage is 

important for: 

1.treat the genetic problems 59 48.8 

2.control the expansion of 

genetic disorders in Palestinian 

society 

54 44.6 

3. to  determine the gender of 

the baby. 

4 3.3 

4.to avoid infectious diseases. 4 3.3 



   44 

 

 

Question (2) got the highest number of correct answers. The question was 

about “the method of transmission of genetic disease.” The answer 

breakdown was: genes, which was the correct answer, (86% n=105), 

infection by touch (0.8%, n=1), by contaminated water and air (0.8% n=1), 

while (11.6% n=14) seemed to believe that genetic disorders could not be 

transmitted. 

Question (3) asked about “the purpose of genetic counseling.” Most 

subjects (56.2%, n=68) chose the right answer which was “to decrease the 

cases of genetic problems in society.” Meanwhile, 10.7% (n=13) thought 

the purpose is to terminate the pregnancy of fetuses with genetic problems, 

and 33.1% (n=40) assumed that the purpose is for treatment. 

Question (4) was about the most suitable time for genetic counseling. The 

correct answer is “when planning for pregnancy,” which was chosen by 

57% (n=69) of participants. 32.2% (n=39) seemed to think the most 

suitable time to be in the first trimester of pregnancy, and just 10.7% 

(n=13) thought the correct answer was directly after delivery. 

Question (5) was “is it possible to reduce the incidence of genetic 

problems?” 81.8% (n=99) answered with yes, and 18.2% (n=22) believed it 

was not possible. 

Question (6) was if “consanguineous marriage increases the incidence of 

genetic problems” and 99.2% (n=120) answered with yes, it does. 

Question (7) was asking whether “the responsibility of transmission of 

genetic problem is due to” the genes of both parents, which is the correct 



   45 

 

 

answer (85.1%, n=103), the father‟s genes alone (8.3%, n=10), or the 

mother‟s genes alone (6.6%, n=8). 

Question (8) was about the “importance of the genetic counseling”, and 

42.1% (n=51) of parents believed it was only important in the first 

pregnancy. The correct answer is that it is important in every pregnancy, as 

56.2% (n=68) of parents answered. Lastly, 1.7% (n=2) seemed to believe 

that it is not important at all. 

Question (9): was “the relatives with the top priority to undergo DNA 

analysis to determine the genetic problem of a child are” the parents as 

90.1% (n=109) of subjects answered. Some (8.3%, n=10) thought 

grandparents should also do the analysis, while others (1.7% n=2) thought 

that cousins also have a priority. None of the subjects (0% n=0) seemed to 

thinks that there is no need for DNA analysis. 

Genetic counseling before marriage is not customary in the Palestinian 

society, therefore when subjects were asked about the importance of that in 

question 10, nearly half of the answers (48.8% n=59) wrongly chose 

“treatment of genetic diseases” as the answer, and approximately 44.6% 

(n=54) chose the correct answer, which is “to control the expansion of 

genetic disorders in Palestinian society.” Meanwhile, 3.3% (n=4) thought 

“to determine the gender of the baby” is the correct answer, and another 

3.3% (n=4) thought it was to avoid infectious diseases. 

 

 



   46 

 

 

4.3.3.2 Evaluation and scoring: 

The purpose of the previous ten questions was to evaluate parents‟ 

knowledge (table 4.4). Each correct answer equals one mark, with a scoring 

scale ranging from 0 to 10. Scores were classified into three categories: 

good, moderate, and weak knowledge. There is no literature discussing 

how to determine a cutoff point for knowledge scores, so the researcher 

divided the scores into three intervals: good (7-10), moderate (4-6), and 

weak (0-3). This makes classifying and evaluating knowledge levels easier, 

and makes it possible to link it with attitudes. In this sample, 5% (n=6) of 

parents had weak levels of knowledge, 31.4% (n=38) had moderate levels, 

and 63.6% (n=77) had good knowledge levels. 



   47 

 

 

Table (4.4): Knowledge level 

Figure (4.2): knowledge level 

4.3.4 Parents’ attitude: 

Table (4.5) in (annex 2) shows families‟ attitudes toward genetic 

counseling and testing. Attitudes were studied using a Likert scale 

questionnaire, which used five responses to answer questions. These were: 

strongly agree, agree, undecided, disagree, and strongly disagree. Positive 

attitudes were indicated by the answers: agree and strongly agree, while 

Knowledge Level Frequency Percent  

 

 

Weak  6 5.0% 

Moderate  38 31.4% 

Good  77 63.6% 

Total  121 100.0% 



   48 

 

 

negative attitudes were indicated by disagree and strongly disagree. For 

questions 6,10, and 11, positive attitudes were determined by answers 

(disagree and strongly disagree), which were used to avoid bias. A total of 

22 questions were used for this evaluation: 

Question (1): “Couples have to do genetic testing when they plan to get 

married”: 88.4% (n=107) of participants agreed, and 1.7% (n=2) disagreed, 

so attitudes toward this question are considered significantly positive. 

Question (2): “All pregnant women have to do genetic tests for the fetus”: 

93.3% (n=113) of the answers were agreed, so attitudes toward this 

question are considered significantly positive. 

Question (3): “Experience of genetic problem in the family will increase 

their care about genetic counseling”: 97.5% (n=118) of couples agreed with 

this, which indicates positive attitude. 

Question (4): “Genetic testing has to be available for people as needed”: 

99.2% (n=120) of parents agreed, indicating a positive attitude. 

Question (5): “Genetic counseling must be available even for families with 

family history free of genetic problems”: 72% (n=91 ) of families agreed; 

again, this indicated a positive attitude. 

Question (6): “Genetic counseling should never be used because of 

religious and social reasons.” This question was written using negative 

wording, and 83.5% (n=101) of answers disagreed, indicating a positive 

attitude.  



   49 

 

 

Question (7): “IVF could be used to avoid defected genes when couples 

want to have a healthy child”: answers to this question were: disagree 

(22.3%, n=27), I don‟t know (37.2%, n=45), and 40.5% (n=49) said they 

agree. This is considered a negative attitude. 

Question (8): “Genetic testing must be done for all newborns”: 78.5% 

(n=95) of answers agreed, and that‟s positive.  

Question (9): “Each person has the right to know if he is at risk of having a 

genetic problem in the future”: 95.5% (n=116) of parents agreed ,which is 

considered a positive attitude.  

Question (10): “Each person has the right to know the probability of 

having a child with a genetic problem”: 72% (n=87) of answers were I 

don't know, which is considered negative attitude.  

Question (11): “We have to bow to the genetic problems without 

interference”: this question was written in negative wording, and 91% 

(n=110) of answers were 'disagree', which indicates a positive attitude. 

Question (12): “Genetic counseling must be avoided because it increases 

the probability of abortion”: this question was in negative wording, and 

79% (n=96) of answers disagreed, which is a positive attitude. 

Question (13): “I will take a genetic consultation when I plan for 

pregnancy in the future”: 86.7% (n=105) of answers agreed, and that‟s a 

positive attitude. 



   50 

 

 

Question (14): “I advise my children to have genetic counseling before 

marriage”: 95% (n=115) of families agreed, and that‟s a positive attitude.  

Question (15): “The presence of a genetic disorder in a family may lead 

them to stop consanguineous marriage”: 86% (n=104) of families agreed, 

and that‟s positive.  

Question (16): “Genetic testing helps couples discover their genetic history 

and may destroy their relationship” 76.5% (n=84) of answers agreed, and 

that‟s positive. 

Question (17): “Genetic counseling can lead to avoiding consanguineous 

marriage”: 92.6% (n=112) of answers agreed, indicating a positive attitude. 

Question (18): “Genetic counseling decreases the probability of having a 

genetic problem”: 74% (n=90) of answers agreed, which is considered a 

positive attitude. 

Question (19): “It is important to consider the Islamic view in making the 

right decision to marry according to my family health history”: 65.3% 

(n=79) of answers were agree, which is considered a positive attitude. 

Question (20): “My information about genetic counseling is not 

insufficient”: this question displays the desire of parents for education, 

69.4% (n=84) of parents answered agree, which is considered positive. 

Question (21): “Laboratories that offer genetic testing service are not 

available in my country”: this question displays the desire of parents to 



   51 

 

 

have benefits, 91% (n=111) of them answered I agree, and that‟s a positive 

attitude. 

Question (22): “High cost of genetic counseling may decrease the desire to 

take it”: like the previous question, this question displays the parents‟ 

desire to have benefits, and 86% (n=104) of respondents agreed, and that‟s 

a positive attitude. 

It is clear that most of the attitudes toward previous items were positive (20 

out of 22), so it could be considered that parents‟ attitudes towards genetic 

counseling and testing are positive. The mean was calculated by taking the 

sum of positive answers (20) and dividing that by the number of items (22); 

the mean was 81%. 

The following section will examine whether certain factors affect parents‟ 

attitudes. Education and the number of sick children are two of the most 

important factors to discuss. 

4.4 Inferential:  

4.4.1 Introduction:  

To evaluate the relationship between the three categories of knowledge 

(weak, moderate, and good) and the 22 items for attitudes, a chi-square test 

was used. Results of significant differences were organized in Table (6), 

then correlation tests were done for significant results in order to discover 

the type of the relationship (positive or negative). To study the 2
nd

 and 3
rd

 

hypotheses, ANOVA test was used to compare between and within groups.  



   52 

 

 

4.4.2 Chi-square test  

Chi-square is a statistical test commonly used to compare observed data 

with data we would expect to obtain according to a specific hypothesis 

(Fisher and Yates, 2006). It is used when the researcher has two categorical 

variables from a single population, and wants to determine whether there is 

a significant association between the two variables with two or more values 

(Stat Trek, 2016).  

4.4.3 Correlation: 

A statistical method that measures the degree to which two variables move 

in relation to each other. It is computed into what is known as the 

correlation coefficient, the values of which must fall between -1 and 1 

(Invostopedia, 2016) 

 4.4.4 ANOVA Test: 

One-way analysis (ANOVA) or (Analysis of Variance) is used to 

determine whether there are any statistically significant differences 

between the means of two or more independent groups (Lund Research, 

2013). (ANOVA) is used with one categorical independent variable 

(attitudes) (total evaluation: positive or negative) and one continuous 

variable (knowledge evaluation). The independent variable can consist of 

any number of groups (Richard, 1998). When we compare more than two 

groups (weak, moderate, and good), based on one factor (independent 

variable), ANOVA is the most suitable statistical tool (Statistics Solutions, 

2013). 



   53 

 

 

4.4.5 Knowledge and attitudes (chi square analysis): 

Table(4.5)Chi square significant table(effect of knowledge on attitudes) 

Pـvalue Total Good Moderate Weak Answer Item 

0.004 

2 

1.8% 

2 

1.8% 

0 

0.0% 

0 

0.0% 
Disagree 1.Couples have 

to do genetic 

testing 

when they plan 

to get married 

12 

9.9 

2 

1.7% 

8 

6.6% 

2 

1.7% 

I don‟t 

know 

107 

88.4% 

73 

60.3% 

30 

24.7% 

4 

3.3% 
Agree 

0.02 

22 

18.2% 

9 

7.4% 

10 

8.2% 

3 

2.5% 
Disagree 

2. Genetic 

counseling 

must  

available even 

for families 

which family 

history is free 

of genetic 

problems 

8 

6.6% 

5 

4.1% 

2 

1.7% 

1 

0.8% 

I don‟t 

know 

91 

75.2% 

63 

52% 

26 

21.4% 

2 

1.7% 
Agree 

0.001 

101 

83.4% 

70 

57.8% 

29 

23.9% 

2 

1.7% 
Disagree 

3. Genetic 

counseling has 

to be avoided 

for religious 

and social 

reasons 

17 

14% 

7 

5.8% 

6 

4.9% 

4 

3.3% 

I don‟t 

know 

3 0 3 0 Agree 



   54 

 

 

2.5% 0.0% 2.5% 0.0%  

 

0.02 

 

12 

9.9% 

4 

3.3% 

6 

4.9% 

2 

1.7% 
Disagree 

4.Genetic 

testing must be 

done for all 

newborns 

 

 

 

14 

11.7% 

7 

5.8% 

6 

4.9% 

1 

0.8% 

I don‟t 

know 

95 

78.5% 

66 

54.5% 

26 

21.4% 

3 

2.5% 
Agree 

0.01 

 

110 

91% 

73 

60% 

33 

7.3% 

4 

3.3% 
Disagree 

5.We have to 

bow to the 

genetic  

problems 

without 

interference 

 

2 

1.7% 

0 

0.0% 

2 

1.7% 

0 

0.0% 

I don‟t 

know 

9 

7.4% 

4 

3.3% 

3 

2.5% 

2 

1.7% 
Agree 

0.01 

96 

79.3% 

70 

57.8% 

25 

20.6% 

3 

2.5% 
Disagree 

6. Genetic 

counseling 

must be 

avoided 

because it 

increases the 

probability of 

abortion 

12 
3 

2.5% 

7 

5.8% 

2 

1.7% 

I don‟t 

know 

13 

10.7% 

4 

3.3% 

8 

6.6% 

1 

0.8% 
Agree 



   55 

 

 

Table (4.6) shows the relationship between knowledge and attitudes. A 

total of eight items had a significant relationship with knowledge (1, 5, 6, 8, 

11, 12, 17, and 18). In Table (4.6) the first item, “couples have to do 

genetic testing when they plan to get married,” has a significant 

relationship with knowledge (P-value= 0.016). The fifth item, “genetic 

counseling must be available even for families whose family history is free 

of genetic problems”, the difference between the three groups was 

0.04 

 

 

4 

3.3% 

0 

0.0% 

4 

3.3% 

0 

0.0% 
disagree 

7. Genetic 

counseling 

leads to 

avoiding 

consanguineou

s marriage 

 

 

5 

4.1% 

2 

1.7% 

3 

2.5% 

0 

0.0% 

I don‟t 

know 

112 

92.5% 

75 

61.9%  

 

31 

25.6% 

 

6 

4.9% 

 

Agree 

 

0.01 

18 

14.8% 

6 

4.9% 

12 

9.9% 

0 

0.0% 
Disagree 

8. Genetic 

counseling 

decreases the 

probability of 

having a 

genetic 

problem 

11 

9% 

6 

4.9% 

3 

2.5% 

2 

1.7% 

I don‟t 

know 

90 

74.4% 

63 

52% 

23 

19% 

4 

3.3% 
Agree 



   56 

 

 

significant (P-value= 0.04). The correlation test shows that this is a positive 

relationship. 

Item 6, “genetic counseling has to be avoided for religious and social 

reasons”, had a negative significant difference between the groups (P-

value= 0.001). This item was written in negative framing, so a negative 

relationship means positive attitudes. 

For Item 8, “genetic tests must be done for all newborn children”, the 

difference between three groups is considered significant (P-value= 0.02). 

The correlation test revealed this relationship to be positive. 

The P-value for Item 11 “we have to bow to the genetic problems without 

interference,” was 0.02, indicating a significant difference between groups. 

The correlation test indicates a negative relationship between knowledge 

and attitudes towards this item; however, this item was worded negatively, 

so a negative relationship means positive attitudes.  

As for Item 12, “genetic counseling must be avoided because it increases 

the probability of abortion”, the difference between the three groups was 

also significant (P-value= 0.01). The correlation test indicates a negative 

relationship between knowledge and attitudes towards this item, but this  

item was worded negatively, so a negative relationship means positive  

attitudes. 

Item 17, “genetic counseling leads to avoiding consanguineous marriage”, 

showed a significant difference between the three groups (P-value= 0.04). 



   57 

 

 

The correlation coefficient shows there is a positive relationship between   

knowledge and attitudes towards this item. 

Lastly, the P-value for Item 18, “genetic counseling decreases the 

probability of having a genetic problem”, was 0.01, indicating a significant 

difference between groups. The correlation test revealed a positive 

relationship between knowledge and attitudes towards this item. 

There were 14 items with no significant relationship between knowledge 

and attitudes. These items were: 2, 3, 4, 7, 9, 10, 13, 14, 15, 16, 19, 20, 21, 

and 22 (annex 3). 

These items and their respective P-values were: “all pregnant wom\en have 

to do genetic tests for the fetus”, (P-value= 0.7); “Genetic tests must be 

available as needed”, (P-value= 0.1); “Experience of genetic problem in the 

family will increase their care about genetic counseling”, (P-value= 0.3); 

“IVF could be used to avoid defective genes when couples want to have a 

healthy child”, (P-value= 0.1); “Each person has the right to know the risk 

of having a genetic problem in the future”, (P-value= 0.3); “Each person 

has the right to know the probability of having a child with a genetic 

problem”, (P-value= 0.6); “I will take a genetic consultation when I plan 

for pregnancy in the future”, (P-value= 0.7); “I advice my children to have 

genetic counseling before marriage”, (P-value= 0.2); “The presence of 

genetic disorder in a family may lead them to stop consanguineous 

marriage”, (P-value= 0.1); “Genetic testing helps couples to discover their 

genetic history and may destroy their relationship”, (P-value= 0.9); “It is 



   58 

 

 

important to clarify the Islamic view before making the right decision to 

marry according to my family‟s health history”, (P-value= 0.3); “My 

information about genetic counseling are not insufficient”, (P-value= 0.1); 

“Laboratories that offer genetic testing service are not available in my 

country”, (P-value= 0. 3); and “High cost of genetic counseling may 

decrease the desire to take it”, (P-value= 0.6). All these P-values indicate 

that there is no significant difference between groups for any of these 

items. 

As discussed in the section about parents‟ attitudes, attitudes were clearly 

significantly positive (in 20 items from 22), however as can be seen from 

the results of the correlation test (table 4.7), only eight of these positive  

 attitudes had a positive correlation with parents‟ knowledge levels. 

  Table (4.6) Correlations: to discover the relationship between     

knowledge and attitudes: 

           Item Sig. Correlation 
Person‟s 

Coefficient 
Correlation 

Couples have to do 

genetic testing when 

they plan to get marry 

0.016 Positive 0.220 Positive 

Genetic counseling must 

be available even for 

families 

 which family history 

0.04 Positive 0.272 Positive 



   59 

 

 

free of genetic problems 

 

Genetic counseling had 

been never used for 

religious and social 

causes 

0.001 Negative -0.330 Negative 

Genetic testing must be 

done for all newborns 

 

0.02 Positive 0.324 Positive 

We have to bow to the   

genetic problems 

without interference 

 

0.01 Negative -0.228 Negative 

Genetic counseling must 

be avoided because it is 

increase the probability 

of abortion 

0.01 Negative -0.296 Negative 

Genetic counseling leads 

to avoiding 

consanguineous 

marriage 

0.04 Positive 0.191 Positive 

The first hypothesis of this research was that parents who have high 

knowledge about genetic testing and counseling are expected to have more 



   60 

 

 

positive attitudes towards testing and are more likely to use it. The 

previously-mentioned results allow the researcher to accept this hypothesis. 

4.4.6 Number of sick children and parents’ knowledge and attitudes: 

To study the relationship between the number of children suffering from 

genetic disorder and parents‟ knowledge and attitudes, an ANOVA test was 

performed at the significance level of ( 0.05) with total (positive or 

negative) attitude evaluation (Table 4.7). 

Table (4.7) ANOVA Test: Number of sick children and attitudes and 

knowledge: 

This table shows that there are no differences between the means at a 

significance level of (= 0.05). The difference in attitudes between the 

different groups (parents with one child with a genetic disease, parents with 

Item Df Mean Square F Sig. 

Attitudes Between Groups 2 0.002 0.023 0.977 

 Within Groups 118 0.101   

 Total 120    

Knowledge Between Groups 2 0.364 1.058 0.350 

 Within Groups 118 0.344   

 Total 120    



   61 

 

 

two children, and parents with three children) has a significance value of 

0.977, which is much higher than the significance level (= 0.05), and 

indicates an insignificant difference. Similarly for knowledge, the 

difference between groups had a significant value of 0.350, which is again 

much higher than the significance level and indicates an insignificant 

difference. 

These results suggest that there is no significant difference in parents‟ 

knowledge and attitudes towards genetic counseling and testing based on 

the number of children with genetic diseases that they have. 

Based on these conclusions, the second hypothesis, which states that 

“Parents who have more children with genetic diseases have more 

knowledge and more positive attitudes towards genetic counseling” can be 

rejected and the null hypothesis can be accepted instead. 

4.4.7 Number of lost children and parents’ knowledge and attitudes: 

To investigate the relation between the number of children who have died 

due to genetic disorders and their parents‟ knowledge and attitudes towards 

genetic testing and counseling, an ANOVA test was performed at  the  

( 0.05) significance level.  

4.4.8 Parents' educational level and their knowledge evaluation and 

attitudes: 



   62 

 

 

To study the relationship between parents‟ educational level and their 

knowledge and attitudes, another ANOVA test was done, again with a 

significance level of (= 0.05). 

Table (4.8): ANOVA Test: Number of deceased children and attitudes 

and knowledge: 

Item Df Mean Square F Sig. 

Attitudes Between Groups 1 0.190 1.929 0.167 

Within Groups 119 0.099   

 Total 120    

Knowledge Between Groups 1 0.009 0.025 0.875 

Within Groups 119 0.347   

 Total 120    

This table shows that there are no significant differences between groups at 

the 0.05 significance level. The significance value for differences in 

attitudes between the different groups (parents with one deceased child, 

parents with two deceased children, parents with three deceased children, 

and parents with six deceased children) is 0.167, which is higher than the 

significance level, and indicates an insignificant difference. Additionally, 

the differences in knowledge between the different groups had a 

significance level of 0.875, again indicating an insignificant difference. 



   63 

 

 

These results suggest that there is no significant difference in parents‟ 

knowledge and attitudes towards genetic testing and counseling based on 

the number of children they‟ve lost due to genetic disorders.  

Therefore, the third hypothesis stating that “parents who lost more children 

due to a genetic problem have more knowledge and more positive attitudes 

towards genetic counseling” can be rejected, and the null hypothesis is 

accepted 

Table (4.9): Parents’ educational level and their knowledge and 

attitudes. 

Item 
Sum of 

Squares 
  Df 

Mean 

Square 
F Sig. 

 Attitudes  Between Groups 0.374 4 0.093 0.938 0.445 

Within Groups 11.552 116 0.100   

 Total 11.926 120    

 Knowledge  Between Groups 6.753 4 1.688 5.663 0.0003 

Within Groups 34.585 116 0.298   

 Total 41.339 120    

The table above shows that there are no significant differences between the 

attitudes of different groups (elementary education, middle school, 

secondary education, diploma education, or higher academic education) 



   64 

 

 

toward genetic testing and counseling. The significance value for 

differences in attitudes was 0.445, which is higher than the significance 

level of 0.05, and indicates an insignificant difference. On the other hand, 

the table shows that there is a significant difference in knowledge levels 

between the different groups, with a significance value of 0.003, indicating 

a significant difference. 

4.4.9 Parents’ income and knowledge: 

To study the relationship between parents‟ income and their knowledge, an 

ANOVA test was done at the 0.05 significance level.  

Table (4.10): Parents' income level and their knowledge evaluation 

Item 
Sum of 

Squares 
Df 

Mean 

Square 
F Sig. 

Knowledge Between Groups 6.753 3 1.488 5.663 0.29 

Within Groups 34.585 115 0.398   

 Total 41.339 122    

This table shows that there is no significant difference in knowledge 

between the different income groups. The significance value for this 

difference is 0.29, which is larger than 0.05 and indicates an insignificant 

difference. This suggests that family income does not affect parents‟ 

knowledge about genetic testing and counseling. 

4.5 Summary: 



   65 

 

 

Data collected in this study was analyzed using SPSS Version 19. The first 

section of the survey collected general and demographic data, which 

showed that 75% of subjects were mothers, and 25% were fathers. 

Additionally, 79.3% of subjects had one child with a genetic condition, 

19% had two, and only 1.7% had three. The genetic diseases that children 

suffered from were classified according to body systems impacted: 28.1% 

of children had metabolic disorders, which are considered the most 

common in Palestine. 

The most common associated factors for genetic problems were: ignoring 

premarital genetic tests, early motherhood, consanguineous marriages, and 

a family history of genetic problems. 

Parents‟ knowledge was evaluated using a quiz of ten questions, with a 

possible score ranging from 1 to 10. Scores were classified into three 

categories based on three score intervals: good (7-10), moderate (4-6), and 

weak (0-3). In this sample, 5% of parents had weak knowledge, 31.4% 

scored moderately, and 63.6% had scores indicating good knowledge. 

Parents‟ attitudes towards genetic testing and counseling were 

overwhelmingly positive; respondents agreed with 20 out of 22 items on 

the attitudes part of the questionnaire, which reflects a positive attitude. 

Different relationships and correlations were investigated in order to study 

the following hypotheses: 

Hypothesis (1): Parents who have high knowledge about genetic testing 

and counseling are expected to have more positive attitudes toward and are 



   66 

 

 

more likely to use it. To study this hypothesis, a chi-square test was used to 

compare attitudes between groups. The chi-square test results suggest 

knowledge affects attitudes positively, which allows for the first hypothesis 

to be accepted.  

Hypothesis (2): Parents who have more sick children have more 

knowledge and more positive attitudes towards genetic counseling. To 

investigate this, an ANOVA test was used. The results showed that there is 

no relationship between the number of sick children and parents‟ 

knowledge and attitudes towards genetic counseling and testing. Based on 

these results, the second hypothesis was rejected.  

Hypothesis (3): Parents who have lost more children to genetic problems 

have more knowledge and more positive attitudes towards genetic 

counseling. An ANOVA test was used again, and the results indicated that 

there is no relationship between the number of deceased children and 

parents‟ attitudes. However, there was a relationship between the number 

of deceased children and parents‟ knowledge. The third hypothesis was 

also rejected based on these results. 

 



   67 

 

 

Chapter (5) 

                                            Discussion  

  5.1 Introduction 

Results of this study were compared with other national and international 

studies, some of which were previously mentioned Chapter 2. The results 

of this study were sometimes similar and sometimes different from the 

articles in the literature review. In the following section, the different 

aspects of this study will be discussed in detail while comparing this study 

to other published works. The purpose of this is to discover how different 

socio-demographic factors affect knowledge and attitude data. 

5.2 Socio-Demographic characteristics 

Out of a total of 121 subjects, 35% (n=42) were in PMC, while the rest 

were in Al-Najah University Hospital. Moreover, 75% (n= 91) of them 

were females (mothers) and 25% (n=30) were males (fathers). Most 

subjects (48.8%, n= 60) lived in villages, whereas 30% (n=37) lived in 

cities, 14.9% (n=18) lived in camps, and only 5.8% (n=6) were Bedouin 

nomads. It is worth mentioning that consanguineous marriages, which are 

considered a significant risk factor, are more common in villages.  

Unfortunately, only a few epidemiological population studies were 

conducted to investigate the prevalence of genetic disorders among 

Palestinians (Abu Lebdeh and Teebe, 2010).  



   68 

 

 

The educational level of participants was as follows: 26.4% (n=32) had 

higher academic education, 52% (n=64) went to middle and high school, 

and 6.6% (n=8) only finished primary education. The results of this study 

suggest that parents‟ educational level positively affects their knowledge 

levels. The significance value (P-value) was 0.003, indicating a significant 

relationship. 

As for the income of the subjects, 15.7% (n=19) of families had very low 

income (less than 1,500 shekels a month), 27.3% (n=33) had an income 

between 3,500-4,000 shekels, which is considered a middle-class income 

level. However, only 7.4% (n=9) had an income of 4,000 shekels or more, 

which is what‟s considered as „good‟ or „high‟ income. This study found no 

relationship between parents‟ income and their knowledge (P-value= 0.29). 

However, a study in Ohio (2014) found a significant association between 

parents‟ knowledge and household income (Fitzgerald-Butt et al., 2014). 

Other Arab countries had similar demographic distributions; however, 

studies done in Ohio, USA, showed very different distributions. This is 

possibly because the USA is a developed country, and often has higher 

income levels than Arab countries. 

5.3 Associated risk factors: 

Early marriages are common in Arab countries; therefore, the mother‟s age 

was studied as a risk factor for genetic diseases. In this study, 35.5% 

(n=43) of mothers had their first child when they were 20 years old or 

younger, 63% (n=76) when they were between 21-31 years of age, 1.7% 



   69 

 

 

(n=2) when they were between 31 and 40 years old, and no subjects had a 

child after the age of 40. The high percentage of subjects with early 

motherhoods suggests that early marriage is, indeed, a risk factor in this 

study. 

Another significant risk factor is consanguineous marriages, which are very 

common in Arab countries in general, and in Palestine in particular. Most 

parents in this study (71%, n=86) were married to their relatives, 40% 

(n=48) of which were first-degree relatives. A study by Tadmori et al. 

(2009) mentioned that consanguineous marriages, especially among first 

cousins constitute about 25-30% of marriages in Arab countries. 

Although more than half of the subjects (55.4% n=67) had a family history 

of genetic problems (relatives suffering genetic problems), less than 1% 

(n=1) of the subjects did genetic counseling before marriage. This is the 

most significant risk factor. Additionally, lack of laboratories, high costs, 

and lack of awareness are considered obstacles that prevent families from 

undergoing premarital genetic testing. 

Pollution was not significant as a risk factor, as only 6.6% (n=8) of families 

lived in industrialized areas or near a factory. However, it is important to 

take into consideration that Palestine in general is not an industrialized 

country.  

To summarize, early marriage and motherhood, consanguineous marriage, 

and neglecting premarital genetic test are the most significant risk factors 



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for genetic problems in Palestine, while pollution was not a significant 

factor in this study. 

5.4 Parents’ knowledge  

Parents were asked about the meaning of genetic testing, genetic problems, 

its causes, methods of transmission, and prevention methods. Each of these 

questions were scored, and constituted the knowledge evaluation part of 

this study. Only 5% (n=6) of parents had weak knowledge, 31.4% (n=38) 

had moderate knowledge, and 63.6% (n=77) had good knowledge. 

These results are better than the results of an interventional study 

(educational program: pre and post exams) which was conducted in Saudi 

Arabia among university students, where knowledge levels about genetic 

counseling and testing were low (Ibrahim et al., 2011). 

Another cross-sectional study in Netherland examined the knowledge and 

attitudes of patients with chronic diseases towards genetics and genetic 

testing using a questionnaire and a DNA test. The study found that genetic 

knowledge was low for older and lower educated patients (Morren and 

Rijken, 2006). This is consistent with the findings of this study which 

suggest that higher education is indicative of higher levels of knowledge 

(P-value= 0.003). 

Another knowledge and attitude study conducted in Ohio (US) in 2014 

among parents of children with congenital heart defect revealed that 

parents‟ knowledge was good, with 73.8% of parents answering questions 

correctly (Fitzgerald-Butt et al., 2014). Meanwhile, a study conducted in 



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Australia in 2013 among Parkinson‟s disease patients to assess their 

knowledge and attitudes towards genetic testing found that the level of 

knowledge was relatively low (37% correct responses) (Scuffham et al., 

2013). 

It is clear that the subjects of this study had good knowledge levels about 

genetic testing and counseling. Different studies investigated various 

segments of society; including university students and chronic disease 

patients, both of which scored low on the knowledge evaluation. However, 

studies conducted among parents (like this study) seemed to have more 

knowledgeable subjects. It is possible that being a parent of a patient may 

push the individual to becoming more educated and aware about genetic 

issues, as well as genetic testing and counseling. 

5.5 Parents' attitudes: 

Attitudes toward genetic counseling and testing had been studied by a 

Likert scale questionnaire which used five aspects: (strongly agree, agree 

undecided, disagree, and strongly disagree), positive attitude was 

determined by the items (agree and strongly agree) and the negative 

counted by (disagree and strongly disagree). 

(20) items from (22) had high percentage of (agree and strongly agree) and 

just (2) had high percentage (more than 50%) of (disagree and strongly 

disagree), generally this result consider parents might have positive 

attitudes towards genetic counseling, which looks similar to many studies 

as shown below.  



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A cross sectional study in Netherland used questionnaire and DNA test, to 

examine knowledge of patients with chronic diseases and their attitudes 

towards genetics and genetic testing, found that attitudes toward genetics 

were positive and higher levels of genetic knowledge were associated with 

more positive attitude towards genetic counseling (Morren and Rijken, 

2006).  

Another knowledge attitude study conducted in Ohio (US) in (2014) among 

parents of congenital heart defect children showed attitudes towards the 

genetic testing were positive with (57%) agreeing that genetic testing 

would be used for managing health care and finding cures for disease 

(Fitzgerald-Butt et al., 2014).  

Parkinson disease patients were population for a study in Australia, their 

attitudes towards genetic testing and counseling were positive: the vast 

majority (97%)  supported diagnostic testing while (90%) would undertake 

a genetic test themselves, support for predictive test was lower (78%) and 

prenatal genetic testing had the least support (58%) (Scuffham et al., 2013). 

All of above seems different from the study by University of Central 

Lancashire conducted in 1997 in the UK which studied the attitudes of deaf 

adults toward genetic testing for hereditary deafness. The study found 

negative attitudes and they said that they prefer to have deaf children 

(Middleton and Hewison, 1997). This is an old study; the tool was a 

questionnaire which was filled by delegation, which may have led to a lack 

of communication or misunderstanding, especially considering that the 



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population were deaf  individuals. In general it is normal for any person to 

prefer to improve health and avoid having a genetic problem.   

5.6 Knowledge and attitudes: 

This section is to discuss the relationship between knowledge and attitudes; 

knowledge evaluation classified participants into three groups: good, 

moderate and weak. 

Attitudes had been measured  by the Likert scale and considered positive in 

general.       

But when the three groups compared by Chi square, it is found that some 

significant results determined by which group had the positive results and if  

knowledge affecting attitudes (Table 4.6).  

In the item (Couples have to do genetic testing when they plan to get 

married)  there is  a significant effect of good knowledge to have positive 

attitudes (p. value: 0.016).  

A study conducted in Palestine by (Thawabteh, et al. 2005): families of 

Thalassemia mutation shows very good acceptability for prenatal diagnosis 

in b-Thalassemia afflicted families. 

Both results are similar, both conducted in Palestine, so may culture affects 

their attitudes.  

And regarding to the fourth item (Genetic counseling must be available 

even for families whose  family history is free from genetic problems) it 

also has a significant positive attitude by the group of good evaluation  (p. 



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value: 0.04). As mentioned before all of subjects had history of genetic 

problems and wants to stop that in the society.  

The item (Genetic counseling has to be avoided for religious matters) is 

built in negative framing, so the answer 'disagree' expresses positive 

attitudes which significantly affected by the group of good knowledge 

(P.value:0.001). 

Actually no studies in Arab or Moslem societies discussed attitudes 

according to religion, but in this study, although Palestinian society is 

conservative, religion was not considered as a barrier.  

If  (genetic test must be done for all newborns), it was a significant positive 

relationship between knowledge and attitudes (P. value: 0.02).  

As mentioned before  , this study and other literatures found that parents' 

attitudes towards testing were positive, especially those who had good 

knowledge.    

(We have to accept to the genetic problems without interference) this item 

had a significant negative relationship between knowledge and attitudes 

towards this item, but this item had written in negative framing, so negative 

relationship mean positive attitudes.  

Families want to stop suffering and live in a healthy society, so did not 

agree to bow to the genetic problems without interference.   

Regards to Item 12 (Genetic counseling must be avoided because it  

increases the probability of abortion). The difference between the three 



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groups was negatively significant (P-value: 0.01). By correlation test it was 

a negative relationship between knowledge and attitudes towards this item, 

but this item was written in negative framing, so negative relationship 

mean positive attitudes, that similar to the finding of a study by 

(Thawabteh, et al. 2005) families of Thalassemia mutation show very 

good acceptability for prenatal diagnosis in b-Thalassemia afflicted 

families, and all couples with affected fetuses opted for abortion, this study 

was conducted in Palestine. While a study about prenatal testing by 

qualitative interviews found that parents' decisions around selective 

termination were not being made by unknown others, but by members of 

their own family (Boardman, 2014) that mean they may accept abortion 

for abnormal or sick fetus. 

Otherwise abortion is not an easy decision, but may families refer that to 

religious and medical opinions.      

(Genetic counseling leads to avoid consanguineous marriage): this Item had 

a significant positive association between knowledge and attitudes towards 

this item (P-value: 0.04). In the section of knowledge evaluation question 

(6) was if the consanguineous marriage increases the incidence of genetic 

problems (99.2% (n=120) think yes it increases that (which was the correct 

answer). 

So good knowledge about consanguineous marriage and genetics affects 

attitudes positively. On the other hand, consanguinity in this study 

considered as one of the associated risk factors. 



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The item (Genetic counseling decreases the probability of having genetic 

problems) most of subjects were agree and their evaluation was good. 

A st