Abstract
Aim:
To identify issues and challenges of genomics education in Hong Kong, Taiwan and Mainland China.
Background:
The use of genetics/genomics in health care, such as genetic testing, pharmacogenomics and tumour profiling in the context of cancer, is increasing. The rapid application of genetics/genomics in clinical practice requires healthcare providers to be competent to practise genetics-related patient care.
Sources of evidence:
We reviewed current practices in genomics education in nursing in Hong Kong, Taiwan and Mainland China, including the opportunities for nurses to advance their knowledge and recommendations to incorporate genomics education in the nursing curriculum in these regions.
Findings:
While many citizens and health professionals recognize the importance of new and exciting research areas of genomics/genetics, there are still many gaps in the translation of genetic/genomic medicine into clinical practice. There is also a similar lack of genetics professionals in China.
Conclusion:
Hong Kong, Taiwan and Mainland China face challenges in promoting genetic education in nursing. A strategic approach in a coordinated effort ineffectively translating genomic knowledge into healthcare practice should be established in these three regions.
Implications for nursing and policy:
Nursing educators in Hong Kong, Taiwan and Mainland China should link with the international nursing community (e.g. Global Genomics Nursing Alliance) and form closer networks to improve education in the area of genetics and genomics. From a policy level, genomics education is suggested to be incorporated in nursing curriculum to enhance nurses’ competency in incorporating genetics/genomics service into patient care.
Keywords: China, Genetics, Genomics, Nursing Education
Introduction
Much discussion has been initiated to integrate genetics/genomics knowledge in nursing education in the west in order to provide better medical care in the future (Aiello 2017; McCormick & Calzone 2016). The medical counterparts in Asian countries have been actively following this trend of developing genomics/genetics research which has made notable advances in translating the research into clinical practices in some countries. However, nursing faculties are lagging behind in the effort in preparing nurses and nurse scientists in genetics/genomics practices and in research development when compared to other countries. This problem is compounded by a lack of moves to update the minimal competencies of nurses in genetics/genomics as has occured with the iterative consensus-building approach in the United Kingdom (Kirk et al. 2014). Although people in Hong Kong, Taiwan and Mainland share similar traditions, in China education systems, healthcare systems and economic status are vastly different. This article is a review of current practices in genomics education in nursing in Hong Kong, Taiwan and Mainland China to identify issues and provide possible solutions to improve nursing education in the new era of precision medicine.
Healthcare systems in Hong Kong, Taiwan and Mainland China
In Hong Kong (HK), most of the health service is provided by public hospitals, paid for by taxation and small co-payments at the point of service. Private health care is also widely available in HK (Kong et al. 2015). The current increase in number of nurses is still inadequate, as the nursing shortage is consistently reported. For example, it was estimated that an additional 2130 nurses were needed to relieve the stress brought by the shortage of nurses in the year of 2017–2018 (The Government of Hong Kong, 2017). Similarly, nurses in Taiwan have an estimated 7-fold heavier workload compared with counterparts in the United States (US), and the nurse to patient ratio is 1:8–10 on daytime shifts and 1:20–30 on night (Liang et al. 2012). China also has a severe shortage of nursing manpower, with each 1000 population having only 2.05 nurses in 2013 (Wu et al. 2016). With the shortage of workforce and the already packed curriculum in nursing education in the region, requiring practicing nurses to learn genetics/genomics or adding extra components into the curriculum may cause concerns. The increased pressure at work and at school may greatly reduce one’s professional enthusiasm, affecting the integration of genetics/genomics knowledge.
Integrated genetic/genomics services in Hong Kong, Taiwan and Mainland China
Hong Kong has a centralized genetic testing and counselling centre provided by the Department of Health (2017). Two nurses, who trained in the UK for specialized genetics/genomics services, provide services in this centre to support the handful of physicians who perform the duties of genetic counselling. There is no official board-certified genetic counsellor in HK, but only physicians who are trained in medical genetics (as of December 2017, there are five such clinical genetics consultants). The number of these physicians–geneticists is estimated to be approximately 0.7 per million population, approximately ten times lower than the number of genetic counsellors in the United States (Cheung 2016; Pain 2016). In the private sector, it is the medical genetics practitioners from various organizations providing genetic test service in both mainland China and HK. In HK, there are 11 private hospitals carrying out patient-paid services. However, clinical genetics has yet recognized as a clinical specialty in above regions. Nurses are trained by these hospitals/centres on an ad hoc short-term basis. Besides private hospitals that may have some in-house genetic testing services or send the patients’ DNA for gene tests, there are also several private companies offering various genetic/genomics services in HK. But the burden of interpreting the results of these patient-paid services would sometimes fall on the nurses or physicians who treat the patients.
In Taiwan, oncologists or specialized genetic counsellors provide more services of genetic counselling, and specialized nurses contact patients for their daily care and clinical follow-up.
In Mainland China, usually obstetricians or oncologists rather than nurses perform genetic counselling. In some of the more advanced and larger hospitals, there are specialized genetic counsellors and some senior nurses have already trained for genetic counselling. Due to the lack of full health-care coverage, the role of nurses in genetic counselling may be depended on the policies of organizations and complexity of the genetic/genomics involved. For example, Veritas (a genetic testing company) offers genetic testing for patients in China, but it does not provide post-test counselling for these patients. It would be therefore desirable to educate genetic nurses for genetic screening and explain results explanation, and genetic counselling.
On the website of gene tests launched by the US National Institutes of Health listing international genetic testing laboratories, HK, Taiwan and Mainland China have only 2, 9 and 2 gene test entries from 1, 1 and 2 laboratories, respectively. These are very low numbers compared with approximately 28 998 tests and 258 laboratories available in the United States. It is partly due to under-reporting as some laboratories in China such as the Shenzhen Birth Defect Screening Project Lab (Dong et al. 2014) are not included on the list.
The significance of genomics education in nursing in Hong Kong, Taiwan and Mainland China
Nursing education and the challenges faced due to a shortage of skilled and experienced nurses in HK have been discussed previously (Chair et al. 2018). Nursing education in HK is achieved at the diploma, associate degree, baccalaureate and post-graduate level training enrolled nurses, registered nurses and advanced practicing nurses. Similarly, nurses in Taiwan are classified into three categories depending on their length of training: licensed, registered and advanced registered nurses. In mainland China, nursing education programmes are also offered from a low level of pre-registration, associate or baccalaureate degrees to a high of post-graduate level (Gao et al. 2012).
Currently, families affected by genetic diseases, for example G6PD deficiency, are counselled by community nurses, obstetric nurses, nurses in the Genetic Screening Unit and in the Maternal and Child Health Centres in HK. However, currently nurses are not differentiated by their education, specialty training and competence (aside from mental health nurses). In Taiwan, a cross-sectional survey of 501 Taiwanese undergraduate nursing students revealed that these students have limited genetic knowledge but are willing to approach genetic content (Hsiao et al. 2011). It is hoped that this report would provide a guide for how to integrate genetics into nursing curriculum and provide insights into accrediting nursing specialty in genetic nurses. Such genetic nurses are essential to care for patients who suffer from a disease that has a genetic component such as cancer. Additionally, oncology nurses also need to continuously update and maintain their knowledge of genetics and genomics given the rapidly expanding use of genomics in cancer care (Eggert 2017).
Training opportunities in genomics education
Two levels of competencies for nurses in genomics education
(1) Basic competencies needed by every nurse regardless of academic degree, role or clinical specialty. Since genetic/genomic diseases or conditions affect nearly every specialty of medicine, every nurse should be able to address the genetics/genomics issues that could be contributing to the condition and the needs of the patient and relatives who might be at risk of these conditions. Such competencies should be better gained from nursing programme or training before entering the workforce. Such basic knowledge and skills should be maintained throughout continuing education via the Internet or conferences.
Training via the Internet
Many courses are freely available via the Internet for those who wish to update their knowledge on genetics/genomics. When ‘genetics’ and ‘genomics’ are searched in Coursera, more than 155 broadly related courses in English and 11 in Simplified Chinese matched the keywords. However, none of these are specifically designed for nurses. The International Society of Nurses in Genetics offers online webinars, for example a webinar on clinical decision-making model to help assess which patients should be referred for genetic counselling (US$50 non-members fees). The Cincinnati Children’s website offers some free online modules as part of the Genetics Education Programme for Nurses (Cheung 2016; Pain 2016). There is a Global Genetics and Genomics Community (G3C) website (2019) that has online interactive case studies which are very important resources for self-studies, curriculum or as part of continuing education. With the language barriers, nurses in other part of the world may not be able to participate in such online courses or derive much benefit even after participating.
Training in conferences
Hong Kong, Taiwan and Mainland China hold membership of the International Society for Neonatal Screening, and meetings held in the Asia Pacific region related to neonatal screening would help update genetic/genomic knowledge of nurses. For instance, the meetings held by the Asia Pacific Region of the Society for Neonatal Screening or the conference and workshops were organized by Asia Pacific Society of Human Genetics. However, fees for registration, hotel accommodation and travel are generally quite expensive. Clinical nurses generally do not get the necessary support or leave of absence to attend these meetings.
(2) Advanced competencies needed by genetic specialist nurses. Further advanced practice expertise could be obtained by those interested in more complex services. These competencies could be achieved by completing relevant training in formal degree/institutional settings.
Training opportunities in formal degree/institutional settings
In HK, no significant dedicated lectures about genomics are taught in the basic nursing programme at the baccalaureate level. Some basic genomics knowledge is currently incorporated into paediatric lectures, for example beta thalassaemia or sickle cell anaemia in lectures on haematology. As for genomics education offered at the post-graduate level in HK, the Chinese University of Hong Kong offers post-graduate programmes (M.Phil., Ph.D. or M.Sc.) that have a 2-h session on the introduction of further basic genomics in nursing and another 3-h session about genetics and genomics plus several hours of laboratory sessions depending on the programme curriculum. In addition, for more advanced genetics/genomics programmes, there are some learning opportunities in nonnursing schools in HK. These programmes are usually fulltime Master programmes that are self-financed and designed for medical technologists other than nurses.
In Taiwan, the Taiwan Association of Nurse Practitioner offers educational programmes to provide professional specialty nursing information and knowledge for nurses. For example, a brief education session was shown to improve nursing students’ genetics knowledge (St-Martin et al. 2017). The Chang Gung Memorial Hospital has a Genomic Medicine Research Core Laboratory to facilitate clinical genetic investigations (Su et al. 2015). Academia Sinica has a Genome Research Centre to work collaboratively with hospitals in Taiwan for translational medicine and disease biomarker discovery. There is also a genetic counsellor programme offered by the National Taiwan University for those who have at least 1-year working experience.
In Mainland China, the Institute of Genetics and Developmental Biology Chinese Academy of Sciences in Beijing has many teams researching into genomics and bioinformatics, with a team at the Centre for Genome Biology delivering basic training in Clinical Genetics. In the more clinical stream, the Chinese Board of Genetic Counselling (CBGC) organizes workshops at three different levels at different locations of China. These workshops are typically 7 days of lectures with an examination at the end and a 3 months of distance learning with webinar and assignments every week (CBGC 2019). The Beijing Genomics Institute in Shenzhen, one of the biggest sequencing centres in the world, provides educational videos on its websites which can be viewed free of charge. This can be a useful teaching tool for nurses. Between May 2016 and May 2017, there was a research study offering free sequencing of HLA genes of 100 families with beta thalassaemia in order to help those individuals who might benefit from stem cell transplantation therapy to find matching donors. Such a study may have presumably provided some educational opportunities for nurses since there is an estimation of 30 000 000 patients with beta thalassaemia in the southern regions of China. In addition, China collaborated with the Wellcome Trust and the University of Oxford to launch the China Kadoorie Biobank project which aims to find genetic factors that affect chronic diseases of more than half a million adults aged 30–79 in China. Such a project has the potential to significantly influence the development and application of genetics/genomics into healthcare system. However, better dissemination of the genetic/genomics knowledge to the patients/participants/families would be ideal for maximizing the impact.
Recommendations for incorporation of genomics education
Adoption of new courses including genetics/genomics content should take place in curriculum revision
At the baccalaureate level, materials from AACN Essentials (American Association of Colleges of Nursing, 2008) can help integrate core training in genetics related to genetic diagnosis and/or risk assessment in nursing education curriculum. At the post-graduate level, an expanded and upgraded core training in genetics/genomics would be needed, including more current evidence that supports intervention strategies, and more complex conditions such as the importance of the association between HLA-B*5801 in gout pharmacogenomics and better prediction of the possible risk of allopurinol for some patients. Another approach is to provide a genetics/genomics minor stream for a subset of nursing students, such as The Genomics Minor for master degree nursing students offered by University of California, San Francisco School of Nursing. The incorporation of genetics/genomics research in Ph.D. programme is advisable as of Ph.D. programmes is advisable as 8% of these relate to genetics/genomics (Wyman & Henly 2015). Such an approach is in line with the vision of the Idea Festival Advisory Committee of linking Ph.D. education with a better preparation for future nursing scientists (Henly et al. 2015) and integrating omics into Ph.D. programmes (Conley et al. 2015). The Genomics Knowledge Matrix serves as a guide for doctoral education in genetics/genomics and can be viewed on the ONSEN website (Regan et al. 2019).
New education programmes should be developed for genetic counsellors/genetic nurses
At Chinese University of Hong Kong, a 2-year programme has been developed for genetic counsellors (Department of Obstetrics and Gynaecology 2019); however, it is designed broadly targeting obstetricians, paediatricians and laboratory professionals in addition to nurses. This 2-year programme may be too demanding in terms of time and financial commitment for nurses.
The Internet can be used to deliver education programmes. However, access to overseas resources might be difficult in mainland China more so than in HK and Taiwan due to censorship issues. Regardless, it is still necessary to develop culturally and ethnically specific counselling education programmes for nurses (Sellers et al. 2016) due to the cultural differences (e.g. differences in characteristics used) between these two regions.
Organization of new exchange programmes
Several nursing schools/departments have offered exchange programmes relating to genetic education, but these are not specifically orientated towards genomic education. Table 1 lists the names of these nursing schools. A new initiative could be encouraged to establish links between nursing schools that are strong in genomics and allow nursing students to learn genomics through the exchange programmes.
Table 1.
Nursing School | Location | Programme | Link |
---|---|---|---|
University of California San Francisco | San Francisco, USA | Genomics Minor for Master programme | https://nursing.ucsf.edu/academics/programs/master-science-advanced-practice-programs/genomics-minor |
Imperial College London, UK University of Cambridge, UK University of Exeter, UK University of Sheffield, UK University of Southampton, UK |
London, Cambridge, Exeter, Sheffield, Southampton, UK | Master degrees in Genomic Medicine | https://www.genomicseducation.hee.nhs.uk/ |
University of Toronto | Ontario, Canada | The clinical stream of the M.H.Sc. in Medical Genomics | http://www.moleculargenetics.utoronto.ca/medgen-req-clin/ |
University of British Columbia | Vancouver, Canada | M.Sc. Genetic Counselling Programme | http://medgen.med.ubc.ca/research/medgen-research-faculty-clinical-genetics-genetic-counselling-and-ethics-policy/ |
University of Sydney | Sydney, Australia | M.Sc. in Genetic Counselling | http://sydney.edu.au/medicine/genetic/teaching/index.php |
Revision of registration and setting up genetic nurse specialist credential requirement
Publications such as ‘Genetics/Genomics Nursing: Scope and Standards of Practice’ (American Nurse Association & International Society of Nurses in Genetics, 2016) are a useful professional reference as are textbooks, inservice training guides and credentialling exam resources. Although most of the technical skills of genetic testing are universal, ethnicity-specific variations exist. Thus, training nurses to provide culturally and linguistically appropriate services is necessary so the Genetic Counselling Cultural Competence Toolkit Cases offered by the National Society of Genetic Counsellors could be used for training (National Society of Genetic Counsellors, 2010).
Setting up new guidelines for clinical genetics in nursing
Guidelines about breast cancer risk reduction (Metcalfe et al. 2014) can be adopted and modified, with unified language to profile and express genetics/genomics information in a less complex and more clinically relevant way (Choi & Choi 2014). Other tests for different genetic conditions should also be set up to guide patient nursing care decisions, and such guidelines might need to be fine-tuned to suit the cultural belief of the Asian population.
Upskilling the faculty members in genetics and genomics
Many faculty members do not have formal education in genetics/genomics and would need upskilling. They could enrol in online courses, short and compact courses/workshops or maintenance courses (seminars or journal clubs) specially designed to give faculty members who have taken the basic courses more updated information on genetics/genomics.
Implications for nursing and health policy
Urging governments to prioritize a strategy, mechanism and securing funding for translating basic genomics/genetic research into clinical practice will support our effort to improve genetics/genomics education in HK, Taiwan and Mainland China. Nurses’ acceptance of the necessity to acquire basic scientific and genetic knowledge needs to be encouraged. Nursing faculty members need to upgrade their knowledge of genetics/genomics, and a champion is crucial in the integration of genetics/genomics throughout the curriculum (Jenkins et al. 2015). Nurse educators should actively discuss which areas of effective use of genomic medicine in nursing practice would be beneficial to our community, the development and revision of specialized training programme for genetic nurses, as well as the general genomics/genetic contents of the curriculum in universities/nurse training schools.
Plan for a strategic approach in a coordinated effort
It is important to initiate a dialogue between leading nurses from different regions with an aim of developing an individualized plan. Such plan could be developed by (1) assessing need and existing resources, including assessing graduated nurses on how well they have obtained the genetic/genomics knowledge by setting appropriate questionnaires for nursing students who have finished the programme and those who have post-graduate degree at specific points after they have practised in the community/hospitals; identifying the strategic partnerships with corresponding government (hospital) authorities, physicians and patient groups; (2) planning possible alternative approaches: establishing desirable goals/outcomes of the individualized plan, a general outline and a practical timeline; developing priority diseases/conditions that nurses should be educated (at both the basic level as well as the more advanced specialist nurse level) and plans for incorporation into the basic curriculum (individualized with culturally appropriate resources and adjusted to technical, economic and resources availability); (3) implementing plans according to local circumstances: including setting up a system of communication for the continuous improvement of the educational process and outcome assessment, including international communication about current evidence, research, literal, expertise and novel technologies; (4) co-ordinating nursing practitioners and other sectors, assigning regional teams involved in networking between nurse leaders of different regions and other members of the healthcare system; and (5) building in evaluation process: designing assessment methods to measure the effectiveness and adherence of these educational changes in different regions (by pre-determined questionnaires developed by the previous step) and evaluating the barriers in achieving these goals; setting up a pre-determined time frame for re-assessing the educational materials based on the students’ responses and other outcome measurements of the effectiveness of the training and changes in the curriculum; collecting regional evidence (the number of nursing students taught in the new curriculum and faculty members being upskilled) and significance of these changes in genetic/genomic education (e.g. satisfaction of the clients/partners of the healthcare system, and the number of cases in which risk reduction, prevention of diseases or alleviation of suffering is observed); and gradually establishing training programmes and providing nurses and faculty members of nursing schools with exchange programmes for overseas training. A framework for such an attempt to introduce new topics to standard curriculum at various levels is presented in Fig. 1.
Special consideration should be also made for role definition in genomic nursing. For example, nurses should prepare patients for genetic testing, help in interpretation and explanation of genetic testing results to patients and provide support for patients and families when there are positive results.
Conclusion
While many citizens and health professionals recognize the importance of new and exciting research areas of genomics/genetics, there are still many gaps in the translation of genomic medicine into clinical practice. There is also a similar lack of genetics professionals in Hong Kong, Taiwan and Mainland China. Despite the competing challenges of public health issues, HK, Taiwan and Mainland China must establish a strategic approach in a coordinated effort in effectively translating genomic knowledge for the benefit of the public. Misinterpretation, unprofessional diagnostic testing and the lack of national standards could cause severe damage to the healthcare system. It is important for nursing educators in HK, Taiwan and Mainland China to link with the international nursing community and form closer networks to improve the nursing education in the area of genetics and genomics.
Acknowledgements
We thank Dr. Sey-En Lin and Mr Zhao Fei-yi for information.
Funding
This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors.
Footnotes
Conflict of Interest
No conflict of interest has been declared by the authors.
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