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. 2024 May 20;34(1):e1922. doi: 10.1002/jgc4.1922

Survey of patient satisfaction with genetic counseling services in Korea

In Hee Choi 1,✉, Yun Kyung Kim 2, Seo Yeon Yang 1, Vit‐Na Choi 3,4, Su Min Ji 1, Jun Young Kim 5, Beom Hee Lee 2,6
PMCID: PMC11735173  PMID: 38769825

Abstract

Since the 1990s, genetic clinics have been established in South Korea, enabling the provision of clinical genetics services. However, genetic counseling services are not widely used in the medical system. In contrast, recently, the demand for genetic counseling has increased due to the rapid development of genomic medicine. Therefore, it is important for medical geneticists and genetic counselors to collaboratively provide genetic counseling services. This study aimed to evaluate the perception and satisfaction of patients with rare genetic diseases and their families regarding genetic counseling services provided by a genetics team at the medical genetics center of a tertiary general hospital for rare genetic diseases. From April to November 2021, a survey was conducted with 203 individuals, including 111 and 92 individuals in the patient and family groups, respectively. Overall, 164 individuals (80.8%) responded that they were aware of genetic counseling services, and 135 individuals (66.5%) responded that they were aware of the role of genetic counselors. Patients and their families wanted to receive information about the following from genetic counseling: clinical manifestation and prognosis of the diagnosed disease (78.8%), treatment and management of the disease (60.6%), risk of recurrence within the family (55.7%), treatment options and alternatives for family and prenatal testing, and various support services. The score of satisfaction with genetic counseling services provided by the genetics team was 8.19 ± 1.68 out of 10. Patients with rare genetic diseases and their families were satisfied with genetic counseling services regarding their diseases, test results, and treatment options. Moreover, the patients could receive psychosocial support and referrals to other medical service providers and support services. As a genetic team approach, collaboration between medical geneticists and certified genetic counselors would be useful in providing information and in diagnosing, treating, and managing patients.

Keywords: genetic counseling, genetic counselors, genetics services, service delivery models

What is known about this topic

In Korea, the genetic counselor certification system began in 2015, but the domestic medical law does not recognize it as a qualification. Despite the increasing demand for genetic counseling, there is a shortage of genetic specialists.

What this paper adds to the topic

The genetics team at the medical genetics center confirmed that patients with rare genetic diseases and their families had a high level of satisfaction with genetic counseling services provided by the genetics team. This genetic counseling service may be useful in improving the quality of genetic counseling service.

1. INTRODUCTION

In South Korea, the provision of clinical genetics services started with the opening of genetics clinics in the 1990s, and the number of such clinics has steadily increased since the 2000s (Kim, 2011). Recently, the Korean government has been supporting genetic testing to diagnose rare genetic diseases and is conducting the National Project of Bio Big Data (Kim et al., 2023; Korean Disease Control and Prevention Agency Rare disease Helpline, 2022). These changes have facilitated the conduction of various large‐scale clinical trials and the application of new medical services related to genomic medicine. Accordingly, the demand for genetic counseling services in clinical practice has increased. However, in South Korea, genetic counseling is not recognized as a medical procedure under the health insurance system, and universalizing access to genetic counseling services is a challenge owing to the shortage of genetic specialists. In Korea, genetic counseling is exclusively provided by doctors during outpatient clinic hours due to the current situation. Consequently, there is a scarcity of opportunities for patients with genetic diseases and their families to access genetic counseling services (Choi et al., 2022).

In the US and Europe, medical geneticists and genetic counselors collaborate at genetic clinics, or genetic counselors independently provide genetic counseling services. The Royal College of Physicians in the UK reported that three geneticists and 6–12 genetic counselors are needed per 1 million people (Royal College of Physicians, 2013). However, only a few countries meet this recommended requirement (Abacan et al., 2019). According to the Government Accountability Office report, in 2020, 1 medical geneticist was available per 250 thousand people in the US (i.e., 4 medical geneticists were available per 1 million people) (United States Government Accountability Office, 2020). Conversely, according to the American Board of Medical Genetics and Genomics, 1.9–2.2 medical geneticists were available per 1 million people (Jenkins et al., 2021). Further, approximately 5600 certified genetic counselors were recognized by the American Board of Genetic Counseling (National Society of Genetic Counselors, 2021). In Japan, 1651 medical geneticists (approximately 13 per 1 million people) and 318 certified genetic counselors (non‐MD) (approximately 2.5 per 1 million people) collaborate as genetics teams to provide genetic counseling services (Japanese Society of Genetic Counseling, 2022). Despite the increasing number of geneticists, the number of geneticists remains insufficient compared with the number of patients requiring genetics services (Cooksey et al., 2005; Penon‐Portmann et al., 2020).

In South Korea, the Korea Society of Medical Genetics and Genomics is responsible for certifying geneticists and genetic counselors. Notably, until February 2023, there were 69 medical geneticists and 53 certified genetic counselors (non‐MD) in South Korea (Korean Society of Medical Genetic and Genomics, 2022). Korea's population is approximately 51 million, and while the total number of patients with rare genetic diseases among them has not been reported, the annual figures indicate 55,549 new rare disease patients in 2019, 52,310 in 2020, and 55,874 in 2021 (Choi & Lee, 2022). However, as the investigation was conducted using the record of patients registered as beneficiaries for special cases of healthcare benefits alone, the number of patients with rare diseases may have been considerably higher. Importantly, the number of medical geneticists and genetic counselors is remarkably lower than the number of patients.

Genetics clinics in Korea are typically present in university or tertiary general hospitals in urban areas; therefore, it takes an average of 3–4 months for a new patient to meet a medical geneticist (Choi et al., 2022). In Korea, there is growing interest in developing delivery models for genetic counseling services that involve collaboration between medical geneticists and certified genetic counselors to provide more effective services to patients with rare genetic diseases who have long wait times for medical appointments and relatively short consultation times. Genetic counseling services are remarkably more time‐consuming and labor‐intensive than other healthcare services (Bernhardt et al., 1987; McPherson et al., 2008). Certified genetic counselors are specialists who can provide genetic counseling services in collaboration with medical geneticists. Genetic counselors can contribute by collecting patient medical histories and construct pedigrees to assess the possibility of occurrence or recurrence of diseases in the patient; explain medical and genetic information in an understandable manner; provide information about available tests, management options, prevention methods, and support services; and provide psychosocial support. Furthermore, genetic counselors can provide pretest counseling to discuss the purpose of genetic testing and its benefits, risks, and limitations with their patients and can provide post‐test counseling to explain the genetic test results to the patients.

This study aimed to examine perception and satisfaction regarding genetic counseling services of Korean patients with rare genetic diseases and their families who visited a medical genetics center in a tertiary general hospital. In addition, the genetic counseling service of a genetics team, which involves collaboration between medical geneticists and genetic counselors, was evaluated, and the methods for improving the genetic team service were explored to discuss strategies for solving problems related to the provision of genetic counseling in the healthcare systems in Korea.

2. METHODS

2.1. Participants

Convenience sampling was used to select the study participants from patients with rare genetic diseases and their families who visited the medical genetics center of a tertiary general hospital, Medical Genetics Center, Asan Medical Center, Seoul, Korea, between April and November 2021.

The study included patients with rare genetic diseases diagnosed through genetic testing or chromosomal analysis, in accordance with the Rare Disease Management Act in South Korea, for diseases affecting fewer than 20,000 individuals in the population. The study participants comprised patients with rare genetic diseases, parents of children with rare genetic diseases, or relatives with genetic conditions. Adults aged ≥18 years who could communicate, understand, and respond to the questionnaire were selected for the study. The study was approved by the Institutional Review Board at Asan Medical Center for the ethical protection of the study participants (IRB number: 2020‐1563).

2.2. Genetic counseling service

One medical geneticist and three genetic counselors provided genetic counseling services to this research. When a patient with a rare genetic disease visits the outpatient clinic of the Medical Genetics Center, a medical geneticist provides treatment and consultation in the clinic. Subsequently, one genetic counselor offers additional genetic counseling services in a separate space. Genetic counseling is provided by clinical geneticists and certified genetic counselors, and patients do not incur costs. The medical geneticists provided medical and genetic information about the diagnosis, treatment, and management of diseases. The genetic counselors took the medical history of the patients, constructed a pedigree, and explained the medical and genetic information provided by the medical geneticist to the patients in an easy‐to‐understand manner. In addition, the counselors provided psychosocial support and information related to health management and medical costs, as well as helped patients in their decision‐making process, such as family testing or prenatal diagnostic testing. Patients or family members who agreed to participate in the study completed a questionnaire immediately after receiving genetic counseling.

2.3. Instrumentation/procedures

We recruited participants from patients and their families who visited the Medical Genetics Center and were diagnosed with a rare genetic disease and received genetic counseling services. Immediately after providing genetic counseling services, researchers explained the purpose and methods of the study face‐to‐face to the participants recruited at the clinic. Those who agreed to participate signed consent forms and answered surveys in a separate setting in the presence of a certified genetic counselor. Participants answered the survey on their own, and the process was conducted without the intervention of researchers.

The researchers developed a measuring questionnaire based on a literature review to evaluate genetic counseling services provided by the genetics team (Biesecker, 2001; DeMarco et al., 2004; National Society of Genetic Counselors' Definition Task Force et al., 2006). Subsequently, experts reviewed the appropriateness of the survey questions.

Regarding the general characteristics of patients and their families, the researchers obtained information about sex, age, relationship with the patient, residential area, name of the diagnosis, family history, and time interval between diagnosis and inclusion in the study. Further, the perception of the participants regarding genetic counseling services was assessed. The overall satisfaction levels reported by the participants regarding genetic counseling services were measured on a 10‐point scale, with scores ranging from 1 to 10 and higher scores indicating higher satisfaction. Moreover, a 5‐point Likert scale was used to evaluate their satisfaction with items in genetic counseling services, with scores of 1, 2, 3, 4, and 5 representing “strongly disagree,” “disagree,” “moderate,” “agree,” and “strongly agree,” respectively, and higher scores indicating that genetic counseling was more helpful. The reliability coefficient of Cronbach's α of this study was 0.855 for all questions in the questionnaire. The survey was conducted anonymously, excluding respondent identification information, except for demographic profile items. In this cross‐sectional study, participants used a self‐report questionnaire, and open‐ended comments were also collected.

2.4. Data analysis

In the present study, data were analyzed using SPSS Statistics for Mac OS, version 29.0 (SPSS Inc., Chicago, IL, USA). The sociodemographic characteristics of the study participants were investigated using frequency analysis and percentages. Descriptive statistical analysis was performed using mean and standard deviation to determine the satisfaction of the participants with the counseling services provided by the genetics team. Moreover, for the perceptions of patients and families regarding the genetic counseling services, descriptive statistical analysis was performed using mean and standard deviation. The relationship between satisfaction and perception regarding genetic counseling services provided by the genetics team was analyzed using Pearson correlation analysis. To account for multiple comparisons, statistical significance was set at a p‐value of <0.01. Data normality was assessed through kurtosis and skewness tests. The test results indicated that the absolute values of skewness and kurtosis were <3 and <8, respectively. These results suggested that the distribution function of the data was appropriate (Kline, 2015).

3. RESULTS

3.1. General characteristics of the participants

Of the 315 participants invited to participate in this study, 203 responded and completed the questionnaire and were included in the analysis (response rate: 64.5%). Overall, 203 participants, including 111 patients (54.7%) with rare genetic diseases and 92 family members (83 mothers [40.9%] and 9 fathers [4.4%]), responded to the questionnaire. The general and clinical characteristics of these participants are presented in Table 1. Positive family history was found in 49 patients (24.1%). The interval between the onset of clinical symptoms and disease diagnosis was <1 year in 138 participants (68%) and >10 years in 37 participants (18.2%). According to the Korean Standard Classification of Disease, the patients were diagnosed with 38 rare genetic diseases as follows: 19 endocrine, nutritional, and metabolic diseases (101 patients, 49.8%); 16 congenital malformations and deformations and chromosomal abnormalities (98 patients, 48.3%); 2 nervous system diseases (3 patients, 1.5%); and 1 genitourinary system disease (1 patient, 0.5%).

TABLE 1.

Demographic and clinical characteristics of the participants (N = 203).

Characteristics Categories n (%)
Relationship with the patients Patient 111 (54.7)
Mother 83 (40.9)
Father 9 (4.4)
Sex Male 61 (30.0)
Female 142 (70.0)
Age (years) 20–29 45 (22.2)
30–39 57 (28.1)
40–49 77 (37.9)
≥50 24 (11.8)
Residence Seoul metropolitan city 60 (29.6)
Metropolitan city 38 (18.7)
Self‐governing city 2 (1.0)
Do 101 (49.8)
Others 2 (1.0)
Time period of diagnosis (years) ≤1 138 (68.0)
2–3 19 (9.4)
4–9 9 (4.4)
≥10 37 (18.2)
Disease category Endocrine, nutritional, and metabolic diseases (E00–E90) 101 (49.8)
Diseases of the nervous system (G00–G99) 3 (1.5)
Diseases of the genitourinary system (N00–N99) 1 (0.5)
Congenital malformations, deformations, and chromosomal abnormalities (Q00–Q99) 98 (48.3)
Family history Positive 49 (24.1)
Negative 154 (75.9)
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3.2. Perceptions about genetic counseling services

Among the study participants, 164 participants (80.8%) were aware of the genetic counseling services and 135 participants (66.5%) were aware of the role of genetic counselors.

The most frequently requested knowledge or information by the participants through genetic counseling services was about the clinical manifestation and prognosis of the diagnosed disease (160 patients, 78.8%), followed by the about treatment and management of the disease (123 patients, 60.6%), risk of recurrence within the family (113 patients, 55.7%), treatment options and alternatives for family and prenatal testing (80 patients, 39.4%), and patient support groups, special education, and rehabilitation (45 patients, 22.2%) (Table 2). Other responses included clinical trial‐related information about the disease (2 patients), drug development (5 patients), nutritional counseling (2 patients), and a website providing information about the disease (1 patient).

TABLE 2.

Multiple response analyses of knowledge and/or information that the participants want to obtain through genetic counseling services.

Items Response n (%) Percentage of cases (%)
1. Options and alternatives for genetic testing 80 (15.0) 39.4
2. Clinical manifestation and disease progression 160 (30.1) 78.8
3. Treatment and management 123 (22.1) 60.6
4. Risk of recurrence within the family 113 (21.2) 55.7
5. Patient support groups, special education, and rehabilitation 45 (8.5) 22.2
6. Other responses 10 (1.9) 5.4
Total 531 (100.0) 262.1
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3.3. Evaluation of genetic counseling services

The overall satisfaction of patients and their families with genetic counseling services was rated as 8.19 ± 1.68 out of 10 points (Figure 1). The satisfaction score was highest for the item informing about the medical expense support program (4.46 ± 0.93 points out of 5), followed by the items providing medical knowledge about diseases (4.34 ± 0.74 points), helping with making decisions about diagnostic work‐up/options for genetic testing (4.34 ± 0.82 points), explaining about the ways of being inherited and the recurrence risk within the family (4.24 ± 0.84 points), providing psychosocial support (3.96 ± 0.97 points), and informing about additional resources, including patient support groups, special education, and rehabilitation (3.43 ± 1.24 points) (Figure 2).

FIGURE 1.

FIGURE 1

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Satisfaction of the patients/guardians with genetic counseling service.

FIGURE 2.

FIGURE 2

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Preference for genetic counseling services.

3.4. Correlation between the genetic counseling service content and satisfaction

The correlation between the content of the genetic counseling service and the satisfaction among the participants was assessed. All service items were found to be positively correlated with satisfaction: Q1. Providing medical knowledge about diseases (r = 0.659, p < 0.01), Q2. Explaining about the ways of being inherited and the recurrence risk within the family (r = 0.605, p < 0.01), Q3. Helping with making decisions about diagnostic work‐up/options for genetic testing (r = 0.625, p < 0.01), Q4. Informing about additional resources, including patient support groups, special education, and rehabilitation (r = 0.431, p < 0.01), Q5. Informing about the medical expense support program (r = 0.472, p < 0.01), and Q6. Providing psychosocial support (r = 0.597, p < 0.01) (Table 3).

TABLE 3.

Correlation between the genetic counseling service content and satisfaction level.

Q1 Q2 Q3 Q4 Q5 Q6 Overall satisfaction
Q1 1
Q2 0.735** 1
Q3 0.703** 0.640** 1
Q4 0.380** 0.434** 0.340** 1
Q5 0.381** 0.332** 0.357** 0.365** 1
Q6 0.500** 0.515** 0.471** 0.562** 0.491** 1
Overall satisfaction 0.659** 0.605** 0.625** 0.431** 0.472** 0.597** 1
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Note: Q1. Providing medical knowledge about diseases, Q2. Explaining about the ways of being inherited and the recurrence risk within the family, Q3. Helping with making decisions about diagnostic work‐up/options for genetic testing, Q4. Informing about additional resources, including patient support groups, special education, and rehabilitation, Q5. Informing about the medical expense support program, and Q6. Providing psychosocial support.

**

Correlation is significant at the 0.01 level (two‐tailed).

4. DISCUSSION

In South Korea, genetic counseling is not approved as an official medical procedure covered by the national health insurance system. Notably, only a small number of university or tertiary general hospitals provide genetic counseling services through collaboration between medical geneticists and genetic counselors on a research or educational basis. The government enacted and enforced the Rare Disease Management Act on December 29, 2015, and December 30, 2016, respectively. The government decided that the vision of the 2nd 2022 Comprehensive Rare Disease Management Plan is improvement in the quality of life of patients with rare diseases and their families and announced that the government will promote access to medical consultation and genetic counseling services for patients and their families (Ministry of Health and Welfare, 2022).

Globally, genetic counseling is provided by medical geneticists and certified genetic counselors collaboratively or by genetic counselors alone. In order to implement a genetic counseling service in South Korea's healthcare system, a review of the evaluation of genetic counseling by patients and their families as well as its effectiveness is required. In the present study, patients and their families showed a considerably high level of satisfaction (8.19 out of 10 points) with the genetic counseling service of the genetics team, which involves collaboration between medical geneticists and certified genetic counselors.

This high satisfaction may be attributed to the fact that patients and their families could receive information about medical expense support programs for rare genetic diseases (4.46 ± 0.093 point out of 5). Generally, patients and their families are not aware of government‐ or private sector‐led support programs, and a previous study reported that 79.8% of the patients and their families had no experience of receiving genetic counseling (Choi et al., 2022). The participants of the present study expressed a high level of satisfaction when they were informed by genetic counselors about health insurance allowance registration, medical expense support projects, activity support services for individuals with disabilities, disability benefits, child benefits, rehabilitation benefit vouchers, support for assistive devices, support for language development, free diagnostic programs, etc.

Patients and their families were highly satisfied with the explanation of medical and genetic information regarding their diagnosed diseases. Although there are no treatment modalities for most rare genetic diseases, supportive care can help patients with these diseases. There is a limit to the amount of time a physician can spend treating each patient in South Korea (Choi et al., 2022). Patients and their families find it easier to understand the information about the diseases when genetic counselors provide genetic counseling services as a member of the collaborating genetics team compared with the information provided by physicians alone (Kubendran et al., 2017; Tatsuta et al., 2023). Notably, one of the competencies that genetic counselors should possess is the ability to provide patients and their families with objective and accurate information to ensure that they can easily understand it (Davis et al., 2021; Madlensky et al., 2017). Furthermore, certified genetic counselors can explain the clinical manifestations, treatment and management, and prognosis of diseases to patients and their families in an easy‐to‐understand manner. In particular, the easy‐to‐understand explanation of disease‐related information was a factor in patient and family satisfaction based on the previous studies in the relevant literature (Davey et al., 2005; Helm, 2015; Meiser et al., 2008).

In the present study, a high level of satisfaction was found with the information about the decision‐making process in terms of genetic testing options as well as with the information about the ways of being inherited and the risk of recurrence within the family. During the genetic counseling process, assessing the risk of recurrence within the family based on medical and genetic information and helping patients and their families to make decisions between different options, such as family testing and prenatal testing, significantly influenced patient satisfaction (Biesecker, 2001; Davey et al., 2005; Helm, 2015; Veach et al., 2007).

The emotional and psychological stresses that the patients and their families are exposed to because of the complications and disabilities are very complex and high (Choi & Shin, 2015; Jiang et al., 2023; Rork et al., 2023; Wiegand‐Grefe et al., 2022). Therefore, it is important to educate them about medical and genetic issues and to offer psychosocial support during the genetic counseling process. In the present study, we found that satisfaction with information about psychosocial support was 3.96 ± 0.97, and with information about additional resources, including support groups, special education, and rehabilitation, was rated 3.43 ± 1.24. In particular, satisfaction was high among patients and their families in terms of psychological and emotional support, which enabled the team to understand their concerns to help them adapt to their conditions. Thus, genetic counselors should be able to minimize the stress and anxiety that patients may experience through their interaction with them (Ashtiani et al., 2014; Davey et al., 2005; Helm, 2015; Meiser et al., 2008). Further, genetic counselors can provide psychosocial support based on their understanding of the situations of the patients and their families.

The lowest satisfaction was reported in providing information related to patient support groups, rehabilitation therapy, and special education. This is attributed to the small number of patients with rare genetic diseases in South Korea, resulting in limited opportunities for peer group meetings to form. Additionally, many patients with rare genetic diseases in South Korea may be reluctant to disclose their condition, which can lead to reluctance to participate in such groups. Furthermore, for patients with accompanying cognitive and intellectual impairments, genetic counselors often refer them to specialists in rehabilitation medicine for treatment rather than providing direct information, which may contribute to lower satisfaction levels.

In South Korea, patient consultations are conducted in the healthcare system in a very short and limited time (Choi et al., 2022). Patients and their families reported that the time for genetic counseling was insufficient, and the appropriate time for genetic counseling was found to be 30 min. This finding was described in a previous study (Kim et al., 2010). Physicians alone find it difficult to provide appropriate genetic counseling before and after testing. Although the Korean Society of Medical Genetics and Genomics has been implementing certification for genetic counselors since 2014, the number of certified genetic counselors was 53 as of February 2023, which is a very small number (Korean Society of Medical Genetic and Genomics, 2022). Moreover, certified genetic counselors would need social and institutional support to provide genetic counseling services to patients and their families, including that for the establishment of a genetic counseling allowance and job security support plan.

The present study examined the perceptions and satisfaction of patients with rare genetic diseases and their families regarding genetic counseling services provided by a genetics team. To the best of our knowledge, this is the first study to evaluate genetic counseling services provided by a genetics team via collaboration between medical geneticists and genetic counselors at the medical genetics center in Korea.

The study had several limitations. First, because the participants were recruited through a single center located in the capital city of Korea, the research sample may not represent all patients with rare genetic diseases and their families. In addition, as the study targeted patients diagnosed with rare genetic diseases and their families, it failed to reflect the experiences of individuals who have not received a genetic diagnosis or whose diagnostic status is unknown. Second, due to a constrained research period, convenience sampling was employed. However, efforts were made to minimize biases and confounding by ensuring the inclusion of as many participants as possible. Third, since the research design was cross‐sectional, it did not account for changes in patients' and families' satisfaction with genetic counseling over time. Fourth, the survey relied on self‐report questionnaires using Likert scales, which could introduce response bias based on the perceptions of patients with rare genetic diseases patients and their families and could not accurately report the reasons for non‐participation. Future research should involve repeated studies validating various variables that may influence genetic counseling services across diverse medical institutions. Moreover, to comprehensively understand satisfaction with genetic counseling services, it is necessary to conduct studies on a broader sample. This sample should encompass not only diagnosed patients but also individuals without a genetic diagnosis or whose diagnostic status is unknown.

In conclusion, genetic counseling services provided by collaboration between medical geneticists and genetic counselors in this medical genetics center were effective in providing information and can be helpful in diagnosing, treating, and managing patients. Further, we found that patients with rare genetic diseases and their families were satisfied with genetic counseling services provided by the genetics team.

This study assessed the perception and satisfaction of the genetic counseling service offered by the genetics team to patients and their families affected by rare genetic diseases. The provision of genetic counseling services through the collaboration of a certified clinical genetics doctor and a genetic counselor proved to be effective in imparting information and was beneficial in the diagnosis, treatment, and overall management of patients. It was observed that patients with rare genetic diseases and their families derived satisfaction from the genetic counseling services provided by the genetics team. Introducing a genetics team service model within the domestic medical system, with certified genetic counselors offering genetic counseling, could serve as a solution to enhance accessibility to genetic counseling services for patients and families residing in the region. This will not only expand the scope of genetic counseling but also contribute to increasing the opportunities for patients with genetic diseases and their families to receive genetic counseling services. Further studies are warranted on different plans for utilizing the expertise of genetic counselors and developing guidelines for the jobs of genetic counselors.

AUTHOR CONTRIBUTIONS

The authors In Hee Choi and Beom Hee Lee confirm that they had complete access to all data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis. All authors gave final approval for the publication of this version and agreed to be responsible for all aspects of the work to ensure that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

FUNDING INFORMATION

This research was supported in part by the Bio & Medical Technology Development Programme of the National Research Foundation (NRF), funded by the Korean government (NRF‐2022R1A2C2091689), and a grant from the Asan Institute for Life Science at Asan Medical Center (2019‐IP0039).

CONFLICT OF INTEREST STATEMENT

In Hee Choi, Yun Kyung Kim, Seo Yeon Yang, Vit‐Na Choi, Su Min Ji, Jun Young Kim, and Beom Hee Lee declare that they have no conflict of interest.

ETHICS STATEMENT

Human studies and informed consent: Approval to conduct this research on human subjects was obtained from the Institutional Review Board at Asan Medical Center (IRB No. 2020‐1563). All procedures were conducted in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000. Informed consent was obtained from all patients for inclusion in the present study.

Animal studies: No non‐human animal studies were carried out by the authors of this article.

ACKNOWLEDGMENTS

The researchers deeply appreciate the patients and their families for participating in this study.

Choi, I. H. , Kim, Y. K. , Yang, S. Y. , Choi, V.‐N. , Ji, S. M. , Kim, J. Y. , & Lee, B. H. (2025). Survey of patient satisfaction with genetic counseling services in Korea. Journal of Genetic Counseling, 34, e1922. 10.1002/jgc4.1922

DATA AVAILABILITY STATEMENT

The data that support the findings of this study are available from the corresponding author upon reasonable request.

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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

The data that support the findings of this study are available from the corresponding author upon reasonable request.

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