• Title, Summary, Keyword: Genetic counseling

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Literature Review of Development of the Genetic Counseling Education Program for Genetic Specialized Nurse (유전상담 전문간호사 교육프로그램 개발에 대한 문헌고찰)

  • Kim, Mi-Young;Byeon, Young-Soon;Yoon, Hee-Sang
    • Journal of Korean Biological Nursing Science
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    • v.7 no.1
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    • pp.15-28
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    • 2005
  • Purpose: With post-Genome Project, nurses must be able to incorporate genetic knowledge into their practice. The purpose of the present study aimed at providing the basic information needed to establish an education program for the training of nurses specialized in genetic counseling by comparing and analyzing the education contents in genetics of the various domestic and foreign nursing education institutions, identifying the problems of the existing programs, and investigating the current state of domestic genetic counseling programs. Result: The results of literature review were summarized as follows: Common curricula contents in Korea, Japan and U.S.A. were basic genetic knowledge, genetic counseling and prenatal diagnosis. However, In Korea the curriculum was not included legal, ethical, and social issues. In U.S.A. the course was focused on health promotion related to genetics. The expanded role of nurses is to provide the genetic counseling for clients and their families. So, this articles provided a sample of the new genetic counseling program for nurses which are included basic genetics, genetic counseling, nurse's role and knowledge, legal, ethical, social issues and practicum. Conclusion: this study suggests that this educational program is to brought up genetic specialized nurses in the master's course in the near future.

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Genetic counseling in Korean health care system (유전상담의 제도적인 고찰)

  • Kim, Hyon-J.
    • Journal of Genetic Medicine
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    • v.4 no.1
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    • pp.1-5
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    • 2007
  • Unprecedented amount of genetic information being generated from the result of Human Genome Project (HGP) and advances in genetic research is already forcing changes in the paradigm of health and disease. The ultimate goal of genetic medicine is to use genetic information and technology to develop new ways of treatment or even prevention of the disease on an individual level for 'personalized medicine'. Genetics is play ing an increasingly important role in the diagnosis, monitoring and management of common multifactorial diseases in addition to rare single-gene disorders. While wide range of genetic testing have provided benefits to patients and family, uncertainties surrounding test interpretation, the current lack of available medical options for the diseases, and risks for discrimination and social stigmatization may remain to be resolved. However an increasing number of genetic tests are becoming commercially available, including direct to consumer genetic testing, yet public is often unaw are of their clinical and social implications. The personal nature of information generated by a genetic test, its power to affect major life decisions and family members, and its potential misuse raise important ethical considerations. Therefore appropriate genetic counseling is needed for patient to be informed with the benefits, limitations and risks of genetic tests, prior to informed consent for the tests. Physician also should be familiar with the legal and ethical issues involved in genetic testing to tell patients how w ell a particular genetic risk factor relates with likelihood of disease, and be able to provide appropriate genetic counseling. Genetic counseling become a mandatory requirement as global standard for many genetic testing such as prenatal diagnosis, presymtomatic DNA diagnostic tests and cancer susceptibility gene test for familial cancer syndrome. In oder to meet the challenge of genetic medicine of 21 century in korean health care system, professional education program and certification board for medical genetics specialist including non-MD genetic counselors should be addressed by medical society and regulatory policy of national health insurance reimbursement for genetic counseling to be in place to promote the implementation of clinical genetic service including genetic counseling for proper genetic testing.

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The First Korean Cancer Genetic Counseling Program for Nurses (국내 종양유전상담 간호사를 위한 단기 교육프로그램 개발)

  • Choi, Kyung-Sook;Anderson, Gwen;Jun, Myung-Hee
    • The Journal of Korean Academic Society of Nursing Education
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    • v.12 no.1
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    • pp.104-114
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    • 2006
  • Genetic knowledge for oncology nurses is important in Korea because oncologists are incorporating genetic counseling and genetic testing into their practice. The purpose of this paper is to describe our method of developing the first academic cancer genetic risk assessment and counseling course for Korean nurses. A one-week (non-credit) cancer genetics counseling program was constructed for master's level Korean oncology nurses. The course emphasized basic genetic concepts and principles the genetics of cancer; hereditary cancer syndromes; family history assessments; pedigree construction; risk calculation; surveillance recommendations and treatment options ethical, legal, social, and psychological issues inherent in genetic testing. The goals of this program are to: 1) provide a comprehensive knowledge base for nurses who are currently expanding their scope of practice into the genetic counseling role 2) introduce this knowledge to nurses who want to use it in their practice; and 3) provide cancer genetic knowledge and resources to Korean nursing faculty who plan to incorporate this knowledge into existing master's courses. This academically-based course is recognized as valuable by nurses, nursing faculty, and physicians. With this new knowledge nurses can begin toexpand their role in delivering comprehensive cancer care services.

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Experiences of Breast Cancer Women Undertaking Genetic Test (국내 고위험 유전성 유방암 환자의 유전자검사 경험)

  • Jun, Myung-Hee;Choi, Kyung-Sook;Ahn, Sei-Hyun;Gu, Bo-Kyung
    • Asian Oncology Nursing
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    • v.5 no.2
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    • pp.146-158
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    • 2005
  • Purpose: This study was to obtain a understanding of breast cancer women with high risk for hereditary cancer syndrome. Method: A micro-ethnography was used, including participation observation, open-ended in-depth interviews. Results: Two major arguments were derived. First, When Korean women at high risk to hereditary breast cancer make a decision about whether to take a genetic test, they are strongly motivated by a desire to preserve close kinship bonds and "family love" among their siblings, parents and children. Second, Even after genetic risk assessment and counseling services, Korean women at high-risk for developing a hereditary breast cancer who have been informed that they are mutation carriers, still hold onto previous beliefs about cancer causation. Their cancer prevention strategies are constructed according to their unchanged perceptions and beliefs about cancer causation. Conclusion: More sensitive genetic counseling program needs to be developed. Referral programs and clinical services must be attentive to cultural values and beliefs otherwise cultural attitudes and practices toward genetic counseling will not change.

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A Study of Guidelines for Genetic Counseling in Preimplantation Genetic Diagnosis (PGD) (착상전 유전진단을 위한 유전상담 현황과 지침개발을 위한 기초 연구)

  • Kim, Min-Jee;Lee, Hyoung-Song;Kang, Inn-Soo;Jeong, Seon-Yong;Kim, Hyon-J.
    • Journal of Genetic Medicine
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    • v.7 no.2
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    • pp.125-132
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    • 2010
  • Purpose: Preimplantation genetic diagnosis (PGD), also known as embryo screening, is a pre-pregnancy technique used to identify genetic defects in embryos created through in vitro fertilization. PGD is considered a means of prenatal diagnosis of genetic abnormalities. PGD is used when one or both genetic parents has a known genetic abnormality; testing is performed on an embryo to determine if it also carries the genetic abnormality. The main advantage of PGD is the avoidance of selective pregnancy termination as it imparts a high likelihood that the baby will be free of the disease under consideration. The application of PGD to genetic practices, reproductive medicine, and genetic counseling is becoming the key component of fertility practice because of the need to develop a custom PGD design for each couple. Materials and Methods: In this study, a survey on the contents of genetic counseling in PGD was carried out via direct contact or e-mail with the patients and specialists who had experienced PGD during the three months from February to April 2010. Results: A total of 91 persons including 60 patients, 49 of whom had a chromosomal disorder and 11 of whom had a single gene disorder, and 31 PGD specialists responded to the survey. Analysis of the survey results revealed that all respondents were well aware of the importance of genetic counseling in all steps of PGD including planning, operation, and follow-up. The patient group responded that the possibility of unexpected results (51.7%), genetic risk assessment and recurrence risk (46.7%), the reproduction options (46.7%), the procedure and limitation of PGD (43.3%) and the information of PGD technology (35.0%) should be included as a genetic counseling information. In detail, 51.7% of patients wanted to be counseled for the possibility of unexpected results and the recurrence risk, while 46.7% wanted to know their reproduction options (46.7%). Approximately 96.7% of specialists replied that a non-M.D. genetic counselor is necessary for effective and systematic genetic counseling in PGD because it is difficult for physicians to offer satisfying information to patients due to lack of counseling time and specific knowledge of the disorders. Conclusions: The information from the survey provides important insight into the overall present situation of genetic counseling for PGD in Korea. The survey results demonstrated that there is a general awareness that genetic counseling is essential for PGD, suggesting that appropriate genetic counseling may play a important role in the success of PGD. The establishment of genetic counseling guidelines for PGD may contribute to better planning and management strategies for PGD.

National survey for genetic counseling and demands for professional genetic counselor (유전상담과 전문 유전상담사 수요에 대한 전국적인 조사)

  • Chung, Yoon-Sok;Kim, Sook-Ryung;Choi, Ji-Young;Kim, Hyon-J.
    • Journal of Genetic Medicine
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    • v.4 no.2
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    • pp.167-178
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    • 2007
  • Purpose : The necessity of professional non-MD genetic counselor has been recently emphasized in a medical field. By conducting a national survey on the demands for generic counseling and professional non-MD generic counselor, we can make a long-term master plan to execute the educational program for professional genetic counselors and indeed promote genetic counseling in Korean health care service in a systemic manner. Methods : The survey has been conducted from September 3rd to October 4th of 2007 in a way of e-mail, telephone interview, fax, and direct contacts. It's targets were senior researchers and professors in medical and non-medical institutions, policy makers, research institutions or foundations. The survey questions consist of 16 questionnaires. Results : As a result of survey, 102 of 650 people responded. 80% of respondents indicated that genetic counseling is needed as a health care service and 34% among them considered it as "the most needed". In addition, 77% of the respondents showed that, it is necessary to have a professional non-MD genetic counselor with a master degree or higher in the field of medical genetics and among them 29% thought it as "the most necessary". A 77% of respondents considered that the cost of genetic counseling should be covered by health insurance and among them, 29% answered "strongly agreed". A 56% of respondents chose the answer of "They have a plan to hire the professional non-MD genetic counselor" in their institution, and among them 71% selected "within 5 years" in terms of when to hire. Also, they tend to expect the role of the professional non-MD genetic counselor to be not only "genetic counselor" (60%), but also "researcher" (42%), "educator" (18%) and "clinical laboratory coordinator" (19%). Conclusion : The 102 of 650 people responded to the survey. Based upon the nationwide survey over the needs on genetic counseling in health care service and demands on the professional non-MD genetic counselor, systematic educational program for the genetic counseling, with reimbursement coverage for counseling service by health insurance should be emphasized in development of a master plan.

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A Review on Professional non-MD Genetic Counselors for Education and Accreditation in Korea (비의사 전문 유전상담사의 교육 및 자격의 인증을 위한 소고)

  • Kim, Hyon J.;Doh, Seong Tak
    • Korean Journal of Clinical Laboratory Science
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    • v.41 no.3
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    • pp.93-104
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    • 2009
  • This short review was aimed to provide the information for the people who are interested in genetic counselor education and certification system in Korea. A large part of this study is indebted to HJ Kim's articles on the genetic counselor system, the global standards of genetic counseling curriculums, training program accreditation (TPA), and a certification process for genetic counselors (CPGC) in the US and Japan. The US and Japanese educational systems showed a high degree of similarities in curriculum, accreditation, and certification programs. Based upon this review, we hereby propose that the Korean Society for Medical Genetics should take a key role in providing the TPA and CPGC for non-MD genetic counselors. Requirement for the entrance to a Master's degree genetic counseling program should be open to successful four year undergraduate students for all areas, provided the candidates demonstrate the abilities to master the graduate level study in human genetics, statistics, psychology, and other required subjects. Besides accredited program graduates, eligibility for certification should also include the qualified candidates of genetic counseling with no formally approved education, but with a sufficient amount of clinical experience.

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Genetic Counseling in Korean Health Care System (한국 의료제도와 유전상담 서비스의 구축)

  • Kim, Hyon-J.
    • Journal of Genetic Medicine
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    • v.8 no.2
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    • pp.89-99
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    • 2011
  • Over the years Korean health care system has improved in delivery of quality care to the general population for many areas of the health problems. The system is now being recognized in the world as the most cost effective one. It is covered by the uniform national health insurance policy for which most people in Korea are mandatory policy holders. Genetic counseling service, however, which is well recognized as an integral part of clinical genetics service deals with diagnosis and management of genetic condition as well as genetic information presentation and family support, is yet to be delivered in comprehensive way for the patients and families in need. Two major obstacles in providing genetic counseling service in korean health care system are identified; One is the lack of recognition for the need for genetic counseling service as necessary service by the national health insurance. Genetic counseling consumes a significant time in delivery and the current very low-fee schedule for physician service makes it very difficult to provide meaningful service. Second is the critical shortage of qualified professionals in the field of medical genetics and genetic counseling who can provide the service of genetic counseling in clinical setting. However, recognition and understanding of the fact that the scope and role of genetic counseling is expanding in post genomic era of personalized medicine for delivery of quality health care, will lead to the efforts to overcome obstacles in providing genetic counseling service in korean health care system. Only concerted efforts from health care policy makers of government on clinical genetics service and genetic counseling for establishing adequate reimbursement coverage and professional communities for developing educational program and certification process for professional genetic counselors, are necessary for the delivery of much needed clinical genetic counseling service in Korea.

A Study on Genetic Counseling Curriculum, Accreditation of the Training Program, and the Certification Process of Genetic Counselors in Korea (유전상담 교육프로그램 개발과 전문유전상담사 학회인증제도에 관한 연구)

  • Choi, Jee-Yeong;Kim, Hyon-J.
    • Journal of Genetic Medicine
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    • v.6 no.1
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    • pp.38-55
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    • 2009
  • Purpose: This study was undertaken to provide the framework for development of a genetic counseling training program, and an accreditation and certification process suitable for non-M.D. genetic counselors in Korea. Materials and Methods: Global standards of genetic counseling curriculums, training program accreditation (TPA), and the certification process for genetic counselors (CPGC) in the U.S.A and Japan were reviewed, and a questionnaire survey was performed to elicit opinions among health-care providers including physicians, nurses, technicians, researchers, and educators. In addition, input from professional communities, including the Korean Society of Medical Genetics (KSMG) and Institute for Genetic Testing Evaluation, was sought in formulating the framework of this study. Results: Comparison of U.S.A. and Japan educational systems showed similarities in curriculum, accreditation, and certification programs. Analysis of 117 respondents opinions showed a high level of agreement in the area of global standards; 88% indicated that KSMG should be in charge of TPA and CPGC, while 77% favored a certification exam composed of both written exam and interview components. Conclusion: Based upon this study we propose that the KSMG should be in charge of providing the TPA and CPGC for non-MD genetic counselors. Requirements for the entrance to a Master's degree genetic counseling program should be open to successful four year undergraduate students in all areas, provided the candidates demonstrate the abilities to master the graduate level of study in human genetics, clinical genetics, statistics, psychology, and other required subjects. Eligibility for certification should include qualified candidates of genetic counseling with no formally approved education, but a sufficient amount of clinical experience, in addition to accredited program graduates. Certification examinations should be carried out every two years and the certification should be good for five years, as is the case in Japan.

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Challenge of Personalized Medicine in the Genomic Era (유전의료시대의 "맞춤의학")

  • Kim, Hyon-J.
    • Journal of Genetic Medicine
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    • v.5 no.2
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    • pp.89-93
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    • 2008
  • "Personalized medicine," the goal of which is to provide better clinical care by applying patient's own genomic information to their health care is a global challenge for the $21^{st}$ century "genomic era." This is especially true in Korea, where provisions for clinical genetic services are inadequate for the existing demand, let alone future demands. Genomics-based knowledge and tools make it possible to approach each patient as a unique biological individual, which has led to a paradigm-shift in medical practice, giving it more of a predictive focus as compared with current treatment oriented approach. With recent advancements in genomics, many genetic tests, such as susceptibility genetic tests, have been developed for both rare single gene diseases and more common multifactorial diseases. Indeed, genetic tests for presymtomatic individuals and genetic tests for drug response have become widely available, and personalized medicine will face the challenge of assisting patients who use such tests to make appropriate and wise use of genetic risk assessment. A major challenge of genomic medicine lies in understanding and communicating disease risk in order to facilitate and support patients and their families in making informed decisions. Establishment of a health care system with provisions for genetic counseling as an integral part of health care service, in addition to genomic literacy of health care providers, is vital to meet this growing challenge. Realization of the promise of personalized medicine in the era of genomics for improvement of health care is dependent on further development of next generation sequencing technology and affordable sequencing test costs. Also necessary will be policy development concerning the ethical, legal and social issues of genomic medicine and an educated and ready medical community with clinical practice guidelines for genetic counseling and genetic testing.

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