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Journal of Community Genetics logoLink to Journal of Community Genetics
. 2024 Jun 8;15(4):433–447. doi: 10.1007/s12687-024-00711-0

Knowledge of genetics and attitudes toward genetic testing among university students in Indonesia

Iskandar Hermanto 1,#, Cindy Kurniawati Chandra 1,#, Agustini Utari 2,3, Tri Indah Winarni 2,4, Ferdy Kurniawan Cayami 2,4,✉
PMCID: PMC11410749  PMID: 38851656

Abstract

The development in human genetics must be tracked with the knowledge to provide support and positive attitudes towards genetic research and its healthcare applications, including genetic testing. Unfortunately, there has been a delay in enacting public policies related to the genetics professionals as well as the diagnosis, treatment, and prevention of genetic diseases in Indonesia. This research was conducted to build an overview of genetic knowledge and public attitudes toward genetic testing among Indonesian undergraduates. This cross-sectional study involved undergraduate students selected using the convenience sampling method. The questionnaire consisted of two parts: a true/false questionnaire (16 statements) regarding knowledge of genetics and a 5-points Likert scale questionnaire (27 statements) pertaining to attitudes towards genetic testing. A total of 1596 undergraduate students completed online questionnaire. The highest knowledge score and the most positive overall attitudes were observed in the healthcare-related majors compared to those who studied science and technology and social and humanity. A weak positive correlation was observed between knowledge and attitude toward genetic testing (Pearson’s r = 0.206, p < 0.001). Undergraduate students from healthcare-related majors displayed better in both knowledge of genetics and had more positive attitudes toward genetic testing.

Keywords: Genetics, Knowledge, Attitudes, Genetic testing, Indonesian

Introduction

In the last decades, genetic knowledge has advanced in various fields. It has led to the growth of individualized preventive medicine, which increasingly affects more people and their relatives, and public health is no exception (Collins and McKusick 2001; Zhao and Grant 2011; Hood and Rowen 2013; Heine 2017; Bíró et al. 2018). This advancement in genetics must be balanced with knowledge about it; however, several studies in the public population generally show low levels of understanding of genetics. Proper genetic knowledge will provide benefits to individuals and society, such as more support, less aversion, and positive attitudes towards genetic research and its healthcare applications (Evans and Durant 1995; Jallinoja and Aro 1999, 2000; Calsbeek et al. 2007; Etchegary et al. 2009; Kaufman et al. 2009; Oliveri et al. 2016; Olwi et al. 2016; Chapman et al. 2019). Several studies generally show low levels of understanding of genetics (Jallinoja and Aro 1999; Henneman et al. 2003; Christensen et al. 2010). These misconceptions about genetics and diseases could influence efforts to transform genome-based knowledge into health benefits for individuals and populations (Khoury et al. 2007; Brand et al. 2008; Etchegary et al. 2008; Dar-Nimrod et al. 2019).

The prevalence of genetic and inherited diseases in Indonesia is still relatively high. The neonatal mortality rate caused by congenital defects increased from 10,7% in 2010 to 12,5% in 2019 as the third leading cause of neonatal death (World Health Organization 2013; Indonesian Ministry of Health 2020). Moreover, the leading cause of morbidity and mortality in Indonesia has shifted to non-communicable diseases, dominated by cardiovascular disease (35%), cancers (12%), and diabetes (6%). At the same time, increasing evidence indicates genetic role in these non-communicable diseases. The World Health Organization (WHO) is driven to strengthen preventive approaches to these diseases using new genomic techniques (Collins and McKusick 2001; Bíró et al. 2018). Genetic testing utilization extends from analysis of syndromic diseases to early diagnosis of more common, later-onset traits with complex multifactorial diseases, such as depression, diabetes, or heart disease (Durmaz et al. 2015; Nabholz and Rechfeld 2017; Claussnitzer et al. 2020). In terms of a relatively high number of genetic diseases, early detection and genetic counseling are required to ensure comprehensive treatment, targeted therapy precisely, and better future planning for the patient (Sunarto 1993; Rujito and Ghozali 2010; Mundhofir et al. 2012, 2013; Rahayuningsih 2013; Faradz 2016; Rujito 2018).

However, the application of genetic testing in clinical settings in Indonesia is still limited as the genetic medicine is less familiar and neglected in Indonesia due to a lack of awareness of its future impacts as well as human resources, health facilities, and health costs that high incidence of infectious diseases has drained. Genetic research is hampered by limited funding and access to advanced technology as well as not many researchers are willing to research in this field because genetic diseases are considered incurable (Ariani et al. 2017).

The concept of genetic testing is relatively new to the general public, and public attitudes towards genetic testing determine whether or not genetic testing can be successfully integrated into clinical practice. So far, there has been a lag in implementing public policies for the treatment and prevention of genetic diseases, including the absence of clear regulations regarding the genetic counseling profession in Indonesia (Wahidayat and Wahidayat 2006; World Health Organization 2006; Rujito and Ghozali 2010). Low awareness of the importance of genetic testing contributes to the increasing incidence of the hereditary disorder, worse disease outcomes, and poor quality of life (Chin and Tham 2020).

Regarding these problems, this research was conducted to build an overview of genetic knowledge and public attitudes towards genetic testing among Indonesian undergraduate students.

Materials and methods

Study design and population

This was a cross-sectional study involving 1596 undergraduate students of Diponegoro University, Semarang, Indonesia. This study assessed the level of knowledge of genetics and their attitudes towards genetic testing. The questionnaire was broadcasted to all active university students through the official Single Sign On (SSO) website for a total of 24 days (October 21st to November 16th 2021). The undergraduate students who were fluent in Indonesian, registered as active students, and willing to participate filled out the informed consent form and continued to answer the questionnaire via Google Forms. Respondents from 11 faculties were categorized into three major groups: healthcare-related major (consisting of medical faculty and public health faculty), science and technology major (consisting of engineering, science and mathematics, fisheries and marine sciences, animal and agricultural sciences), and social and humanity major (consisting of law, social and political sciences, economics and business, humanity, and psychology). The sample for this study was selected using convenience sampling. We excluded the undergraduate students who did not fill out the questionnaire completely or filled out the questionnaire more than once. Figure 1

Fig. 1.

Fig. 1

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Schematic of study design

Questionnaire design

We searched previous studies for questionnaires to measure genetic knowledge and attitudes toward genetic testing from different populations, with mainly similar educational background to Indonesian population. We obtained four questionnaires used in previous studies and reviewed each statement on the questionnaires. Three questionnaires (Molster et al. 2009; Haga et al. 2013; Chin and Tham 2020) were used to assess knowledge and attitudes among general public, and one questionnaire (Olwi et al. 2016) was distributed to college students. Questions that contributed to the knowledge of genetics and awareness and/or perception towards genetic testing were included. Similar statements, confusing or ambiguous statements such as 'The onset of certain diseases is due to genes, environment, and lifestyle' (Haga et al. 2013), statements that are relatively difficult for Indonesian people to understand, such as 'Different body parts include different genes' (Haga et al. 2013), statements relating to certain genetic tests that do not yet exist in Indonesia, topics of pregnancy termination or race and religion, were excluded from our questionnaire. If there were words that were difficult to understand, we chose relatively easier diction.

The research questionnaire was translated using a forward reverse translation method from English to the Indonesian language through an official institution (Lembaga Indonesia Amerika Translation). Prior to finalizing, this questionnaire was reviewed by two lecturers (as expert geneticists) at the Diponegoro University to eliminate irrelevant questions and replace confusing terminology and statements.

The final questionnaire consisted of two sections. The first section addressed sociodemographic and background information for undergraduate students, including name, age, gender, the field of study, tuition fee, grade point average (GPA), family history of genetic diseases, and health insurance. The second section contained the knowledge and attitudes questionnaire.

A 16-item questionnaire was constructed to measure the level of genetic knowledge (Molster et al. 2009; Haga et al. 2013; Olwi et al. 2016). The genetic knowledge statement items consisted of the basic science subscale (items 1–6), heredity subscale (items 7–11), and the manifestation of genetic disorder and lifestyle influence subscale (items 12–16). Respondents answered each statement item with ‘true’ or ‘false’. The correct answer was given a score of 1, and the wrong answers got a score of 0; then the scores were summed up to get the total score and the mean was calculated.

The level of attitude was measured using a 5-point Likert scale questionnaire (1 = Strongly disagree, 2 = Disagree, 3 = Neutral, 4 = Agree, and 5 = Strongly agree) consisted of 27 items regarding attitude toward genetic testing adapted from previous studies (Haga et al. 2013; Olwi et al. 2016; Chin and Tham 2020). This section was comprised of items regarding general aspects and perception (favourable and reserved) of genetic testing, which translates to subjects’ awareness and attitudes toward genetic tests.

Statistical analysis

The data were analysed using IBM SPSS Statistics 25.0 Software for statistical analysis. Kolmogorov Smirnov normality test was used to determine the normality of data distribution. The comparison of means of the normally distributed data were analysed using an independent T-test and one-way ANOVA to determine all variables associated with attitudes, and the mean of the level of genetic knowledge between each sociodemographic factor. We used Mann–Whitney test and Kruskal–Wallis for the data that were not normally distributed. Bonferroni post hoc correction was done to compare the differences among variables. Regarding attitudes toward genetic testing, we determined an attitude of ≥ 3 as a positive attitude (conversely, an attitude of ≤ 3 is considered a positive attitude for reversed questions). A significance level of p < 0.05 was used. This questionnaire was tested for reliability and validity using ω analysis and factor analysis using principal components analysis and varimax rotation.

Results

Characteristic of the sample

A total of 1596 undergraduate students consisted of 427 students (26.75%) majoring in healthcare-related major, 678 students majoring (42.48%) in science and technology major, with the remaining 491 students (30.76%) studying social and humanity filled out the questionnaire at the time of data collection. Most respondents were female (66.9%) and studied natural science in high school (79.4%). There were an equal number of respondents from lower (47.6%) and higher (52.4%) economic status, which were determined from college tuition assigned by the university. Regarding academic performance, those with a high GPA were more numerous than those with a medium- and low-grade point average (GPA), at 69.4%, 28.3%, and 2.3%, respectively. Most of the respondents (78.3%) claimed not to have or to not know the presence of genetic disease in the family. Only 182 (11.4%) of the respondents did not have any health insurance at the moment. The characteristics of the sample are displayed in Table 1.

Table 1.

Characteristics of Research Participants

Variables N (%) Total
Healthcare-related major (Medical and Public Health) (n = 427) Science and Technology (n = 678) Social and Humanity (n = 491)
Sex 1596
  Male 107 (25.1) 276 (40.7) 145 (29.5) 528 (33.1)
  Female 320 (74.9) 402 (59.3) 346 (70.5) 1068 (66.9)
High school education 1596
  Natural Science 426 (99.8) 676 (99.7) 166 (33.8) 1268 (79.4)
  Social science 1 (0.2) 2 (0.3) 325 (66.2) 328 (20.6)
Economic status (n = 1353) 1353*
  Low 159 (40.4) 269 (47.4) 216 (55.2) 644 (47.6)
  High 235 (59.6) 299 (52.6) 175 (44.8) 709 (52.4)
Academic performance 1095*
  Low 2 (0.7) 17 (3.7) 6 (1.7) 25 (2.3)
  Medium 99 (33.7) 124 (27.1) 87 (25.4) 310 (28.3)
  High 193 (65.6) 317 (69.2) 250 (72.9) 760 (69.4)
Family history of genetic disease 1596
  Have family history of genetic disease(s) 79 (18.5) 148 (21.8) 119 (24.2) 346 (21.7)
  Do not have family history of genetic disease 348 (81.5) 530 (78.2) 372 (75.8) 1250 (78.3)
Health insurance 1596
  Have health insurance 408 (95.6) 590 (87.0) 416 (84.7) 1414 (88.6)
  Do not have health insurance 19 (4.4) 88 (13.0) 74 (15.3) 182 (11.4)
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*Some respondents chose not to disclose information

Knowledge of genetics

Overall, of all the existing statements, the highest score of knowledge about genetics was observed in the healthcare-related major (mean 14.29 ± 1.49), compared to those who studied science and technology (mean 13.85 ± 1.60) and social and humanity (mean 13.48 ± 1.74), with p < 0.001. There was no significant difference between the mean genetic knowledge of males and females (p = 0.770). The knowledge of genetics differed significantly depending on the high school education, where students from natural science had a mean knowledge of 13.99 ± 1.57, which was 0.68 units higher than social science students (mean 13.31 ± 1.79), with p < 0.001. The social and economic status of the students did not significantly alter the students’ knowledge of genetics (p = 0.751), nor did their academic performance (p = 0.756). Although there was no significant difference, the mean of genetic knowledge was found better along with a better GPA in academic performance. Having a family history of the genetic disease was significantly associated with a better knowledge of genetics (p = 0.001).

The students’ responses to the genetics statements are displayed in Table 2. Most of the answers regarding the basic science of genetics were correct. However, in terms of basic science, there was still a misunderstanding of the relationship between genes and DNA (with the highest number of correct answers occupied by the social and humanity major (87.0%), followed by the healthcare-related major (85.0%), and social and humanity (82.3%); p = 0.088) Table 2. There were some gaps concerning the manifestation of genetic diseases revealed by the statement ‘the carrier of a disease gene may be completely healthy’ (with the highest number of correct answers occupied by the healthcare-related major (71.0%), followed by science and technology (65.3%), and social and humanity (57.6%); p < 0.001)and ‘having increased genetic risk means you get that disease regardless of what you do’ (with the highest number of correct answers occupied by the healthcare-related major (74.9%), followed by science and technology (62.5%), and social and humanity (59.9%); p < 0.001). Further analysis using Post hoc analysis was performed to analyze the differences between each major in the case of basic science, heredity, and manifestation and lifestyle influence subscale knowledge of genetics (Table 3). There were no significant results between the genetic knowledge subscales when compared to each field of study, but the highest mean number of correct items on each subscale was found in healthcare-related major (mean 5.42 ± 0.75), followed by science and technology (mean 4.48 ± 0.74), and social and humanity (mean 3.94 ± 1.03) (Table 2). Significant results were only obtained in the total score of genetic knowledge compared to each field of study (p < 0.001).

Table 2.

(A) Number of the correct answer of each statement pertaining to knowledge of genetics among undergraduate students. (B) Mean number of correct items on each subscale pertaining to genetics knowledge among undergraduate students

A Statements Field of Study (n = 1596) K-W H (df = 2) p* Effect size
Healthcare-related major (Medical and Public Health) (n = 427) Science and Technology (n = 678) Social and Humanity (n = 491)
Basic science subscale
1 A gene is a molecule that controls hereditary characteristics 424 (99.3%) 659 (97.2%) 474 (96.5%) 7.928 0.019 0.005
2 A gene is a part of a chromosome 408 (95.6%) 634 (93.5%) 453 (92.3%) 4.219 0.121 0.003
3 Genes are inside cells 392 (91.8%) 601 (88.6%) 406 (82.7%) 18.585  < 0.001 0.012
4 Genes are pieces of DNA 363 (85.0%) 558 (82.3%) 427 (87.0%) 4.853 0.088 0.003
5 One can see a gene with a naked eye (R) 413 (96.7%) 645 (95.1%) 451 (91.9%) 11.273 0.004 0.007
6 Your blood can uniquely identify you because it contains your DNA 357 (83.6%) 579 (85.4%) 413 (84.1%) 0.734 0.693  < 0.001
Heredity subscale
7 Genes control the characteristics that we inherit from our parents 414 (97.0%) 659 (97.2%) 448 (91.2%) 26.1  < 0.001 0.016
8 Healthy carrier parents can have a child with a hereditary disease 384 (89.9%) 602 (88.8%) 400 (81.5%) 18.221  < 0.001 0.011
9 All serious diseases are hereditary (R) 410 (96.0%) 629 (92.8%) 464 (94.5%) 5.166 0.076 0.003
10 Consanguineous marriages increase the risk of having a child with a genetic disease 395 (92.5%) 632 (93.2%) 444 (90.4%) 3.156 0.206 0.002
11 If close relatives have diabetes/heart disease, you are more likely to develop these 352 (82.4%) 536 (79.1%) 388 (79.0%) 2.246 0.325 0.001
Manifestation and lifestyle influence subscale
12 The carrier of a disease gene may be completely healthy 303 (71.0%) 443 (65.3%) 283 (57.6%) 18.072  < 0.001 0.011
13 Some of the heritable diseases may not show their symptoms until later in adult life 393 (92.0%) 612 (90.3%) 426 (86.8%) 7.317 0.026 0.005
14 Having increased genetic risk means you get that disease regardless of what you do (R) 320 (74.9%) 424 (62.5%) 294 (59.9%) 26.016  < 0.001 0.016
15 The lifestyle of a person plays a role in developing some genetic diseases such as colon cancer 390 (91.3%) 615 (90.7%) 448 (91.2%) 0.162 0.922  < 0.001
16 Living a healthy lifestyle will not make any difference if you have an increased genetic risk for a disease (R) 385 (90.2%) 562 (82.9%) 398 (81.1%) 15.975  < 0.001 0.010
Total 55.297  < 0.001 0.035
B Subscale
Basic science 5.43 ± 0.74 5.43 ± 0.76 5.41 ± 0.75 0.149 0.928  < 0.001
Heredity 4.44 ± 0.73 4.50 ± 0.73 4.51 ± 0.76 4.065 0.131 0.003
Manifestation and lifestyle influence 3.96 ± 0.99 3.93 ± 1.07 3.95 ± 0.99 0.022 0.989  < 0.001
Total 5.42 ± 0.75 4.48 ± 0.74 3.94 ± 1.03
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Notes: (R): Reversed question; *Significant (p < 0.05); K-W–H = Kruskal–Wallis H test value; df = degree of freedom

Table 3.

Comparison in knowledge of genetics subscale between groups

Subscale Faculties comparison M-W-U (df = 2) p*
Basic science subscale Healthcare-related major vs Science and Technology 144,553.50 0.965
Healthcare-related major vs Social and Humanity 103,620.50 0.735
Science and Technology vs Social and Humanity 164,766.50 0.740
Heredity subscale Healthcare-related major vs Science and Technology 137,780.5 0.121
Healthcare-related major vs Social and Humanity 98,107 0.053
Science and Technology vs Social and Humanity 163,793.5 0.586
Manifestation and lifestyle influence subscale Healthcare-related major vs Science and Technology 144,694 0.990
Healthcare-related major vs Social and Humanity 104,387 0.908
Science and Technology vs Social and Humanity 165,704.5 0.891
Total Healthcare-related major vs Science and Technology 121,274.5  < 0.001
Healthcare-related major vs Social and Humanity 75,973.5  < 0.001
Science and Technology vs Social and Humanity 146,349.5  < 0.001
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*Significant (p < 0.05); M-W-U = Mann–Whitney U test value; df = degree of freedom

Attitudes toward Genetic testing

Most respondents agreed that the development of DNA research is positive medical progress (mean 4.70 ± 0.57) and brings hope for the treatment of diseases (mean 4.65 ± 0.59). Respondents also disagreed with the statement that genetic testing would do more harm to society (mean 1.97 ± 0.97). We found that most of the respondents approved of using DNA-test as means of early detection of diseases and that they would inform their children (mean 4.29 ± 0.82) and siblings (mean 4.22 ± 0.90) about the result of a DNA test. Regarding the possible consequences of genetic testing, such as stigmatization (mean 3.03 ± 1.13) and denial of marriage (mean 3.30 ± 1.03), most of the students remained neutral regarding the question of the impact on health insurance benefits (mean 2.78 ± 1.05). Table 4 shows the respondents’ responses to statements of attitudes toward genetic testing.

Table 4.

Mean score of each question pertaining to attitudes toward genetic testing among undergraduate students (1 = strongly disagree; 5 = strongly agree)

Statement Field of Study (n = 1596) Mean K-W H (df = 2) p* Effect size
Healthcare-related major (n = 427) Science and Technology (n = 678) Social and Humanity (n = 491)
Awareness
1 I am aware that I have a unique genetic feature compared with others 3.91 ± 1.16 3.53 ± 1.23 3.53 ± 1.14 3.63 ± 1.19 37.366  < 0.001 0.023
2 I am aware that not all genetic disorders can be cured 4.25 ± 0.85 3.97 ± 0.98 3.93 ± 0.97 4.03 ± 0.95 33.102  < 0.001 0.021
3 There are technologies in documenting genetic profiles for various genetic disorders 4.37 ± 0.73 4.18 ± 0.76 4.03 ± 0.76 4.19 ± 0.76 51.02  < 0.001 0.032
4 Public’s view and awareness of genetic testing is important 4.44 ± 0.77 4.44 ± 0.78 4.42 ± 0.82 4.44 ± 0.79 0.114 0.944 0.000
5 Genetic testing tells me the risk of acquiring certain diseases 4.63 ± 0.60 4.54 ± 0.68 4.56 ± 0.70 4.57 ± 0.66 3.827 0.148 0.002
6 I think that the development of DNA research is a positive medical progress 4.74 ± 0.50 4.7 ± 0.61 4.68 ± 0.57 4.70 ± 0.57 1.851 0.396 0.001
7 I think the development of DNA research is hopeful for the treatment of diseases 4.69 ± 0.55 4.66 ± 0.63 4.61 ± 0.59 4.65 ± 0.59 6.056 0.048 0.004
Perception
8 I approve of using DNA-testing for early detection of diseases 4.45 ± 0.74 4.38 ± 0.79 4.42 ± 0.77 4.41 ± 0.77 2.334 0.311 0.001
9 I would like to have genetic testing 4.37 ± 0.76 4.17 ± 0.91 4.2 ± 0.89 4.23 ± 0.87 12.127 0.002 0.008
10 I want to know whether my disease is hereditary 4.3 ± 0.87 4.22 ± 0.91 4.23 ± 0.90 4.24 ± 0.89 1.857 0.395 0.001
11 I would inform my children about the results of a DNA-test for a specific disease 4.4 ± 0.77 4.24 ± 0.84 4.27 ± 0.83 4.29 ± 0.82 9.542 0.008 0.006
12 I would inform my siblings about the results of a DNA-test for a specific disease 4.34 ± 0.87 4.18 ± 0.91 4.17 ± 0.91 4.22 ± 0.90 11.816 0.003 0.007
13 Parents have the right to get their children checked up for the risk of developing genetic diseases even if it is not necessary for the child’s immediate health 4.42 ± 0.74 4.44 ± 0.75 4.5 ± 0.72 4.45 ± 0.74 3.837 0.147 0.002
14 A pregnant woman has the right to have her fetus screened for the risk of having a genetic disease that is common in the family 4.63 ± 0.57 4.46 ± 0.75 4.47 ± 0.75 4.51 ± 0.71 9.74 0.008 0.006
15 The doctor has the right to share patient information for genetic tests with the patients’ relatives if it has important health consequences for the relatives 3.8 ± 1.25 4.05 ± 1.08 4 ± 1.10 3.97 ± 1.14 10.307 0.006 0.006
16 Would you approve of having a genetic test to assess the risk of having a genetic disease? 4.41 ± 0.75 4.23 ± 0.85 4.3 ± 0.84 4.30 ± 0.82 10.156 0.006 0.006
17 If the fetus was diagnosed with a genetic disorder, would you like to consult your doctor with the available treatment options? 4.66 ± 0.56 4.5 ± 0.70 4.57 ± 0.62 4.57 ± 0.64 13.479 0.001 0.008
18 Upon approval, the medical staff has the right to use patients’ results of genetic testing for research purposes 4.22 ± 0.86 4.01 ± 0.94 4.07 ± 0.88 4.09 ± 0.90 15.204  < 0.001 0.010
Reserved question
19 The possibility of a DNA-test will ruin one’s future (P) 2.71 ± 1.10 2.73 ± 1.10 2.65 ± 1.09 2.70 ± 1.09 1.936 0.38 0.001
20 As long as a disease cannot be treated, I don’t want a DNA-test (A) 2.13 ± 1.00 2.28 ± 0.98 2.28 ± 0.97 2.24 ± 0.98 10.136 0.006 0.006
21 I don’t want a DNA-test to tell me that I am at risk for a certain disease (A) 1.974 ± 1.00 2.186 ± 1.03 2.153 ± 1.07 2.119 ± 1.04 14.791 0.001 0.009
22 If I had a DNA-test done, my family does not need to know about the result (A) 2.05 ± 1.03 2.29 ± 1.13 2.23 ± 1.13 2.21 ± 1.11 12.353 0.002 0.008
23 The idea of a DNA-test frightens me (A) 2.11 ± 1.03 2.28 ± 1.11 2.37 ± 1.13 2.26 ± 1.10 12.366 0.002 0.008
24 Genetic testing will do more harm than good for society (P) 1.81 ± 0.93 2.05 ± 0.98 1.99 ± 0.98 1.97 ± 0.97 20.051  < 0.001 0.013
25 Genetic testing may lead to stigmatization of the person if diagnosed positive (P) 3 ± 1.17 3.04 ± 1.12 3.03 ± 1.11 3.03 ± 1.13 0.119 0.942  < 0.001
26 Genetic testing may lead to denial of marriage for a couple (P) 3.42 ± 1.07 3.3 ± 1.01 3.19 ± 1.01 3.30 ± 1.03 13.858 0.001 0.009
27 I worry about the consequences of DNA-testing for being able to affect health insurance (A) 2.63 ± 1.08 2.85 ± 1.03 2.82 ± 1.04 2.78 ± 1.05 14.402 0.001 0.009
Total 111.20 ± 11.46 107.92 ± 12.17 108.25 ± 11.59 108.90 ± 11.88 21.857  < 0.001 0.014
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Note: (A): Awareness question; (P): Perception question; *Significant (p < 0.05); K-W–H = Kruskal–Wallis H test value; df = degree of freedom

Significant differences were found in attitudes toward genetic testing in 19 statements: 4 statements related to awareness of genetic testing and 15 statements regarding their perception towards genetic testing. We found that respondents from healthcare related-major had the highest score, which means they have more positive attitudes towards the previously mentioned statements. Concerning the confidentiality of genetic tests results (statement no.15), they are more neutral regarding the idea that doctors have the right to disclose patients’ information, and the possibility of denial of marriage in case of a positive genetic test (statement no. 26).

The most positive overall attitudes were observed in a healthcare-related science major (mean 111.20 ± 11.46) compared to those who studied science and technology (mean 107.92 ± 12.17; p < 0.001) and social and humanity (mean 108.25 ± 11.59; p < 0.001). Further analysis using Post hoc, as seen in Table 5, was done to analyse the difference between each major in the case of awareness and perception toward genetic testing. Awareness and perception toward genetic testing were highest in subjects from healthcare-related major, with p < 0.001 and p = 0.001, respectively.

Table 5.

Comparison in attitudes toward genetic testing between groups

Subscale Faculties comparison M-W-U (df = 2) p*
Awareness Healthcare-related major vs Science and Technology -142.24  < 0.001
Healthcare-related major vs Social and Humanity -185.08  < 0.001
Science and Technology vs Social and Humanity -42.84 0.345
Perception Healthcare-related major vs Science and Technology -104.518 1
Healthcare-related major vs Social and Humanity 82.047 0.021
Science and Technology vs Social and Humanity -22.471 1
Total Healthcare-related major vs Science and Technology -124.65  < 0.001
Healthcare-related major vs Social and Humanity -117.385  < 0.001
Science and Technology vs Social and Humanity -7.264 1
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Notes: *Significant (p < 0.05); M-W-U = Mann–Whitney U test value; df = degree of freedom

Correlation between knowledge of genetics and attitudes toward genetic testing

We observed a weak positive correlation between the total score in the knowledge of genetics and the total attitude score regarding genetic testing (Pearson’s r = 0.206, p < 0.001).

Discussion

Knowledge of genetics

Overall, our study demonstrated higher knowledge of genetics compared to several general population-based studies (Jallinoja and Aro 1999; Henneman et al. 2003; Etchegary et al. 2009; Molster et al. 2009), of which the mean knowledge was 13.85 out of 16 (86,6%). The relatively high level of genetic knowledge might be due to our sample being college students, while they were the general adult population. Also, approximately four-fifths of our respondents were in the natural science field when they were in senior high school. Notably, the present results are somewhat higher than undergraduate students obtained from a Saudi Arabian college (Olwi et al. 2016), Ecuadorian institutions (Ortega-Paredes et al. 2019), Palestinian university (Rabayaa et al. 2024). This favorable finding of the potential rise in genetic knowledge in general also might be due to the increased accessibility of genetic information through clinical settings, health campaigns, social media, and internet sources (Dougherty et al. 2014; Heine et al. 2017). However, we should not rashly assume that these findings of good knowledge relate to actual understanding, as reported in a United States study assessing the public's understanding of basic genetic concepts (Lanie et al. 2004). Although participants appeared to be able to define terms or describe certain genetic science concepts, they might need help to translate their basic knowledge of genetics when making decisions. As some studies have found, better knowledge does not necessarily determine that attitudes are more positive, whereas discriminating and skeptical attitudes toward specific genetic issues are often found in those with high levels of genetic knowledge (Evans and Durant 1995; Jallinoja et al. 1998; Jallinoja and Aro 2000; Gaskell et al. 2003; Henneman et al. 2003).

As we had previously predicted, we found significant differences between fields of study and knowledge of genetics. Respondents in the health sector had higher genetic knowledge than those in science and technology, followed by social and humanity. This is anticipated, as genetic courses are typically included in their university curriculum, in addition to having been introduced to certain genetic terms during high school (Infante-malachias et al. 2010). Studies in Malaysia, Saudi Arabia, United States, and Palestina also showed similar results in terms of fields of study they are currently or have done (Olwi et al. 2016; Bergman et al. 2017; Chin and Tham 2020; Rabayaa et al. 2024).

About one-third of the respondents had misconceptions about the carrier of genetic disease and the meaning of the increased genetic risk among all fields of study. Based on the second most incorrect statement indicates that they did not know that an increased genetic risk does not mean that the occurrence of the disease is absolute, which was not in line with previous reports (Bates et al. 2003; Vries et al. 2005; Molster et al. 2009). This misconception might be influenced by the shortage of health services available in Indonesia, especially genetic services, where patients receive 20% of health education from primary health care providers (Makeeva et al. 2010). This lack of understanding of the carrier of a disease and the risk of a genetic disease is also supported by studies showing that people tend to seek advice about hereditary diseases and risk factors from primary care physicians rather than geneticists, even though these healthcare providers do not necessarily have the knowledge to fulfill the role competently (Kegley 2003; Harvey et al. 2007; Dougherty et al. 2014). The lack of professional knowledge of these individuals can be identified and addressed by exploring the genetic knowledge of healthcare providers (who are perceived to have medium exposure to genetics through their work and learning) (Harvey et al. 2007).

Concerning the basic science of genetics items, more than 90% of respondents could answer correctly, followed by knowledge of heredity, the influence of lifestyle, and the manifestation of genetic disorders. This finding aligns with those of prior research conducted on undergraduate students in Saudi Arabia, Ecuador, and Palestina, where respondents demonstrated proficiency in answering basic science questions concerning gene structure and genetic diseases, yet less correct with more advanced inquiries within the field such as hereditary and influence of lifestyle in genetics (Olwi et al. 2016; Ortega-Paredes et al. 2019; Rabayaa et al. 2024). Nevertheless, our results contrast with past studies on general population, where better knowledge was found on items about genetic disease-related concepts compared to items about the scientific facts (physiology or biology) of genetics and genes (Jallinoja and Aro 1999; Calsbeek et al. 2007; Molster et al. 2009; Fitzgerald-Butt et al. 2016; Dar-Nimrod et al. 2019).

However, regarding basic concepts of genetics, not all respondents could understand the relationship between genes, DNA, chromosomes, and their location in our body. Some respondents also did not know that inherited diseases can appear later in life as adults, not necessarily in childhood. As mentioned before, genetic information about the inheritance and the physiology or biology of genes is available from various sources, including the mainstream media and the internet,(Cheung et al. 2014; Dougherty et al. 2014) which is not necessarily valid, thus providing potential explanations for the variability of errors (Dar-Nimrod et al. 2019). In addition, according to Berth et al., (Berth et al. 2002) vast amount of information about new discoveries and gene technology expectations reported by the mass media confuses the public, giving rise to misconceptions. Another possible explanation is that because of the media attention, people realize that the basic science of genetics is developing very rapidly, so the more they pay attention to the media, the more they will realize that they know very little about genetics, and that will reduce their interest in learning more (Calsbeek et al. 2007). Thus public familiarity is not related to understanding due to the illusion of knowing or perceived understanding (Morris and Adley 2001; Lanie et al. 2004) of a particular terminology or concept because the widespread media reporting may create such a false sense of certainty which will prevent one from seeking further information (Glenberg et al. 1982; Park 2001).

Interestingly, the hereditary function of the genes was known by almost all of the respondents. As many of the various talents, physical, and psychological characteristics mentioned as hereditary traits are given as basic examples in school books, are also part of daily conversation, such as left-handedness and eye color, and hereditary diseases that run in the family (Davison et al. 1989). Moreover, a study showed that the most common hereditary diseases known by the public are multifactorial chronic diseases such as diabetes and cardiovascular disease that run in their families (Jallinoja and Aro 1999). A possible explanation is the tendency of people with these diseases which ‘appear’ from generation to generation in the family may assume that the disease is hereditary (Davison et al. 1989).

Almost 87% of respondents knew that healthy parents can still have children with a hereditary disease. This figure is similar to a study in Finland (Jallinoja and Aro 1999) where they answered 85% of the statements correctly, and higher than a study in the Netherlands (Henneman et al. 2003) where only about three-quarters of the respondents answered correctly. Less known were the statement associated with heredity patterns, such as one-fifth of respondents being unaware of a multifactorial disease (e.g., diabetes/heart disease), which is more likely to be passed on if a close relative has the disease. It is in contrast to a study on the Australian population, where most of the respondents knew that multifactorial diseases such as heart disease and obesity are linked to both environmental and genetic factors (Molster et al. 2009). This lack of understanding may occur because of what people experience in their relatives or neighborhood, such as a disease that runs in families, but with irregular manifestation (Henneman et al. 2003). These gaps need to be our concern because they can be an obstacle to taking preventive measures and early diagnosis of genetic diseases. After all, the causes of most genetic diseases are often multifactorial and influenced by their lifestyle (Molster et al. 2009).

In addition, almost 16% of the respondents did not know that a healthy lifestyle can make a positive difference if they have an increased genetic risk for a disease. However, this percentage is lower than in studies on the Australian population (Molster et al. 2009) and Saudi Arabian college students (Olwi et al. 2016). There were misconception about the meaning of genetic susceptibility, the interaction between lifestyle and genetic disorders, and overemphasized the role of genetics. Similar misconceptions have been found in previous studies and have raised concerns about the implications for population health genomics (Morris et al. 2003; Keighley et al. 2004; Lanie et al. 2004; Rose et al. 2005; Smerecnik et al. 2008). In particular, there are concerns regarding the consequences of such misconceptions, which deterministic beliefs may hinder the adoption of preventive measures, particularly considering that the majority of genetic diseases are multifactorial and can be influenced and managed by lifestyle (Molster et al. 2009).

A high number of respondents who knew about the genetic complications of consanguineous marriages was seen in this study. Physical and mental abnormalities that are seen are often overestimated as a result of consanguineous marriages. In fact, the risk of recessive disorders in their children only increases by 2–3%, as well as a relatively small effect on the prevalence of dominant and X-linked disorders. However, once we encounter consanguinity marriages, we must refer to a clinical genetic center because it indicates individual genetic counseling (Henneman et al. 2003).

Attitudes toward Genetic testing

This research revealed positive attitudes towards genetic testing among university students in Indonesia. Respondents showed similarity in agreement that the public’s view and awareness of genetic testing are critical and that most respondents were aware of the availability of technologies used for documenting genetic profiles to detect genetic diseases. Previous studies also found relatively positive attitudes and receptivity of genetic testing in different populations. Studies in North Carolina, Saudi Arabia, and Malaysia found that participants had positive attitudes towards genetic testing as well as participating in genetic tests (Haga et al. 2013; Olwi et al. 2016; Chin and Tham 2020). A study conducted in Korea further concluded that most respondents were willing to get tested if provided by the national health program to improve their healthcare (Eum et al. 2018). Similarly, this positive finding may be associated with the increasing amount of information available on the internet, in the form of research, and reporting by mass media. It is worth mentioning that incorrect portrayal of genetic testing may also be biased, resulting in poor understanding, overestimation, or exploitation of genetic testing (Calsbeek et al. 2007; Haga et al. 2013; Kampourakis 2017).

We found that respondents from healthcare-related major were consistently more approving in the use of genetic testing for the early detection of diseases and keen to get tested. It also suggested that education was one of the deciding factors for more positive attitudes toward genetic testing. This result is in accordance with previous studies, which agreed that students from health-related major and clinicians were more receptive to the idea and use of genetic testing (Eum et al. 2018; Khdair et al. 2021). A study suggested that formal education takes the role as the primary source of information about genetics (Olwi et al. 2016); therefore, we believe that the field of study would influence students’ attitudes. Previous studies explained that less knowledge correlates with less favourable responses toward genetic testing; thus, people from respective fields of study and occupation are assumed to be more well-informed and familiar with this topic. However, more recent studies discovered that more knowledgeable people were more critical towards the application of genetic testing, as well as the negative implications of a test result (Henneman et al. 2013; Etchegary 2014; Vermeulen et al. 2014; Hauser et al. 2018; Eum et al. 2018). Furthermore, this group is more willing to inform their siblings and children regarding their test results. While the general public may feel pressured or feared, those who are in the healthcare field perceive genetic testing as a way of knowing their genetic risk factors as guidance which influences their decision-making (Etchegary 2014).

Interestingly, this group was also against sharing personal information with patients’ relatives. Those in healthcare related fields carry the responsibility to protect patients’ information and views genetic test results as confidential even to patients’ relatives. A previous study found that healthcare providers are more reluctant to share information regarding patients’ genetic test results due to the consequences of health insurance benefits (Eum et al. 2018). Indonesia only started implementing universal healthcare in 2014, and prior to this, a majority of Indonesians relied on private insurance. The general consensus was that having a predisposition to genetic and chronic disease, which requires lifelong care and financial burden, will pose disadvantages in applying for private insurance in Indonesia, as well as reduced healthcare coverage. Similar concern was observed in a study in Saudi Arabia, where private health insurance is becoming more dominant compared to government-funded insurance, does not cover the cost of genetic testing and treatments for individuals with genetic disease (Olwi et al. 2016). Therefore, in countries where private insurance is more dominant, a positive genetic test result affecting health insurance benefit becomes a concern. Evidently, a study in Canada, which provides universal healthcare insurance to their citizens, reported that people were not as concerned about the impact of a positive test on health insurance benefits (Etchegary 2014). Several studies also mentioned the possibility of social and workplace discrimination, even psychological and family issues that a positive test result may cause (Calsbeek et al. 2007; Etchegary 2014; Eum et al. 2018). Nonetheless, this group was less concerned about genetic testing causing stigmatization than other groups.

Correlation between knowledge of genetics and attitudes towards genetic testing

Regarding the relationship between knowledge of genetics, and subsequently, their attitudes towards genetic testing, we found that there was a statistically significant positive, yet weak correlation between knowledge of genetics and attitude toward genetic testing. This result indicates that respondents with better knowledge of genetics had more positive attitudes toward genetic testing. A previous study found that more knowledgeable respondents were less reluctant to get tested, thus highlighting the importance of health education programs (Calsbeek et al. 2007). However, another study observed an inverse correlation with more negative attitudes toward genetic testing reported (Jallinoja and Aro 1999). This might be associated with some findings that more knowledgeable people were more critical and selective toward the information they received.

Conclusion

To conclude, we found that undergraduate students from healthcare-related major displayed both better knowledge of genetics and more positive attitudes toward genetic testing. This finding is mainly associated with the fact that they are more exposed to information and reporting of genetics and genetic testing. Genetic testing permeates our society through extensive research, and the utilization of genetic testing may allow for person-centered care and reduce the economic burden of various genetic diseases. The public’s view towards genetic testing, which is influenced by knowledge of genetics, is essential in the future of the genomic world. Delivering appropriate and sufficient information to the public is an important role of researchers, healthcare providers, and the government.

Strength and limitation

It is important to note that this study has several limitations. The nature of the cross-sectional design is that it cannot determine the direction of the relationship between genetic knowledge and attitudes toward genetic testing. This study involved highly specific sample, consisted of well-educated undergraduate students from Diponegoro University, which direct representation of the Indonesian public should be approached with caution. Thus, the potential effect of sample bias on our findings remains unknown. Nonetheless, it is noteworthy that several of our findings align with those reported in population-based studies, as evidenced by previous study (Jallinoja and Aro 1999; Haga et al. 2013; Henneman et al. 2013). Moreover, the data collection for this study was done through a self-administered question shared on the online platform, therefore, there is no assurance that the result is an accurate representation of respondents’ attitudes unaffected by looking up information online, friends or families’ opinions.

There was consideration on certain questionnaire items which may lead to overinterpretation, for example, lifestyle influence on ‘a disease or genetic condition’ that may range from subtypes of cancer (where a healthy lifestyle may not make any difference) to diabetes (where it may make a large difference). Such that our findings on genetic knowledge measurement were influenced by respondent perception, or at least in part, a result of items’ selection rather than solely reflecting factual genetic knowledge. In addition, the attitude questions pose different points of view (such as individual vs societal consequences) that not all respondents relate to. This, and the variability in language (harm, stigmatization, frightens vs ‘would you like’) may result in overestimation of the situations portrayed by the questions. Therefore, this information should be interpreted with caution, and it might be necessary for future researchers to conduct a validity and reliability analysis before applying this questionnaire in different demographic background.

Despite the limitations, the sampling method of this study allowed this study to be conducted on a larger scale compared to similar study previously conducted. The findings of this study can be the basis for recommending stakeholders to reinforce the lessons on genetics and its application in schools and colleges curricula (Lambert and Rose 1996; Richards 1996). Assessment of knowledge and attitudes towards genetics and its application to younger populations like high school students becomes necessary. With the rapidly developing field of genetics, students who possess reasonable concepts of genetics and genetic technology can understand and to the extent apply them in the social, legal, economic, and ethical issues involved (Chattopadhyay 2005).

This research can also be the basis to expand research that involves genetic testing and documentation, including genome analysis for common diseases and artificial intelligence in medicine. Research of genetic testing and artificial intelligence relies on the database on genetic variants of the human population, which are still limited. Evidence of populations that are receptive to genetic testing, as described in this study, allows genetic mapping on greater scale and more diverse ethnicity. Genetic testing becoming common practice means the possibility to get tested to being prone to common diseases and eventually gives the chances for screening and disease preventions. Combined with the application of artificial intelligence, such as in pharmacogenomics, genetic testing will have a significant role in improving patient-specific care (Davison et al. 1989; Abdelhalim et al. 2022). Furthermore, there are not many studies regarding knowledge and attitudes toward genetic testing among university students in Indonesia yet, therefore, this result can be used as a reference for future research discussing similar topics. Further study with more general population in Indonesia may be necessary to accurately depict the knowledge and attitudes toward genetic testing in Indonesia.

Acknowledgements

We are grateful to all students in Indonesia who are willing to participate and kindly completed this survey. This work was supported by the vice rector of Diponegoro University Dwi Cahyo Utomo, S.E., M.A, PhD and Wahyudi for the assistance and support during data collection.

Authors’ contribution

All authors contributed to the study conception and design. Material preparation, data collection and analysis were performed by I.H, C.H.C,T.I.W,A.U,F.K.C. The first draft of the manuscript was written by I.H, C.K.C, F.K.C, and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.

Funding

This work was supported by Research Grant from University of Diponegoro, Semarang, Indonesia (RPIBT − No. 233 − 146/UN7.6.1/PP/2020). The funder played no role in the study design or data interpretation.

Data availability

No datasets were generated or analysed during the current study.

Declarations

Ethics Approval

The questionnaire and methodology for this study was approved by the Ethics Commission for Medical and Health Research, Faculty of Medicine, University of Diponegoro prior to this research (Ethics approval number: No. 219/EC/KEPK/FK-UNDIP/VI/2021 and No. 233/EC/KEPK/FK-UNDIP/VII/2021).

Consent to participate

Informed consent was obtained from all individual participants included in the study.

Competing interests

The authors declare that they have no conflict of interest.

Footnotes

Publisher's Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Iskandar Hermanto and Cindy Kurniawati Chandra are contributed equally.

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Associated Data

This section collects any data citations, data availability statements, or supplementary materials included in this article.

Data Availability Statement

No datasets were generated or analysed during the current study.

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