Opportunities and challenges of integrating genetics education about human diversity into public health nurses’ responsibilities in Japan

There are many human genome projects develop tools for researchers to identify new strategic paths for the diagnosis, treatment, and prevention of human diseases and to understand their genetic causes. As a result, there are now more than 60,000 genetic tests are available and allowing the detection of more than 18,000 genes suspected triggering genetic diseases [1]. The increasing number of genetic tests offers companies direct access to consumers (DTCs), providing affordable and easy-to-use genetic testing, without the guidance of healthcare professionals. DTC tests provide predictive testing to determine the predisposition to single-gene disorders such as cystic fibrosis and multifactorial diseases, for example, depression and cardiovascular disease [2]. The International HapMap Project ran concurrently with the Human Genome Project. This project covered the diagnosis of diseases, discovered of genes responsible to diseases, involved in the protection against illnesses, associated with drug response and dramatically accelerated the development of new preventive and therapeutic strategies [3‐5].

To study the genes’ role in diseases, Mayo Clinic is scanning 20,000 genes among thousands of patients, and only 59 genes’ findings will be shared. Mayo will examine certain disease-causing gene variants for heart disease or breast cancer, and share the results to the patient. The use of genetic testing for screening has increased public health contributions [6].

The growing use of genetic testing and screening may not only lead to improvements in public health and health promotion, but also trigger grave ethical, legal, and societal concerns [7‐9]. In 1997, the World Health Organization (WHO) proposed the establishment of ethical criteria at the national and international levels to verify the ethical and social benefits of advancements in medical genetics [10]. To address these emerging ethical issues, many countries have offered solutions for the handling of genetic information [11, 12]. For instance, in Europe, the following three solutions are typically offered: prohibition of any use of genetic information by insurers’ outright, legislation prohibiting genetic information below a certain amount of coverage and Moratoria. The United Nations Educational, Scientific and Cultural Organization (UNESCO) adopted the Universal Declaration on the Human Genome and Human Rights (UNESCO, 1997) to recognize the importance in managing genetic information [13]. Other than laws, conventions, and declarations, improvements in individual ‘genetic literacy’ and the understanding of human genetic diversity could resolve the ethical issues associated with genetic and medical technologies. In addition, ‘Genetics education for the public can best be achieved through education in schools’ [14]. In the future, genetic education will be needed to improve genetic literacy not only for healthcare providers and patients, but also for the general people [15]. WHO highlights the importance of the future role of community healthcare providers as they have direct contact with the residence through their health programs [14].

In Japan, the roles and responsibilities of public health nurses are legally allocated by their affiliated local municipalities. The established system allows public health nurses a speedy and accurate response to health risks, including disasters. In collaboration with stakeholders, public health nurses affiliated with local municipalities’ plan, provide, and evaluate public health services for promoting health. These actions address the common health issues experienced by the general people [16]. However, public health nurses do not have enough knowledge on genetics and sufficient time to address the genetics services demand by the community [17]. Public health nurses belonging to prefectural authorities provide a wide range of specialized public health services as part of their daily work, including measures to counter intractable diseases, tuberculosis, infectious diseases, acquired immune deficiency syndrome (AIDS), etc. [16]. So, they have a lot of opportunities to obtain knowledge on genetics. In contrary, external to their professional duties, the public health nurses who are working as community health providers are facing challenges during health promotion activities specially on genetics-related diseases [17]. So, this study aimed to clarify how public health nurses affiliated with local municipalities perceive the relationship between genetics and professional duties and to identify opportunities and challenges of integrating genetics education into the public health nurses’ professional duties.

The study intended to elucidate how the local municipality affiliated public health nurses perceive the relationship between genetics and professional duties, and to explore the related challenges and opportunities. The study findings revealed that public health nurses encountered difficulties in recognizing genetic issues while providing their professional services. They mentioned that they needed to pursue specialized education and mentoring to handle their clients properly in some cases. During health consultations, public health nurses were more concerned about how to connect patients with supporting services than focusing on the causes of the diseases. Public health nurses may not have been thinking about the causes of the diseases (Subcategory I-1) since the causes and treatments are often managed by hospital staffs. Public health nurses mainly provide lifestyle-related supports to patients. Moreover, public health nurses expressed that they were not conscious of genetic issues when performing their regular duties (Subcategory I-2). This could be attributed to the following two reasons. First, public health nurses are involved with patients through services that provide lifestyle support for recovery. Second, public health nurses provide individualized support depending on the severity and type of genetic disease. Genetic diseases, which require more individualized support, may not focus during public health activities that characteristically possess a population approach. Considering the different duties of public health nurses, it became apparent that they are faced with situations that make it harder for them to be aware of genetic issues while performing their duties (Category I).

Public health nurses working in the field of mother-and-child healthcare and mental health were involved with genetic issues even though not only health consultations, but also conversations with general people during medical checkups and health educations. This is probably because talking about concerns and stress during medical checkups, and health workshops create opportunities to strike up conversations with public health nurses. Cancer, diabetes, and hypertension are diseases well-known to general people. This is probably because people consult with public health nurses about the results of their medical checkups or cancer tests. Consultation issues related to genetics emerged as part of regular dealings with patients (Subcategory II-1). There may have been consultations related to genetics if one paid closer attention to regular dealings with patients (Subcategory II-2).

Public health nurses perceived genetic diseases, not as ‘genetics’, but more to do with general people and family members living in the same community ‘having similar constitutions’ (Subcategory II-3). Studies have shown that cardio-metabolic risks as obesity and high blood pressure differ between communities [18]. Correlation between parent and adolescent body mass index (BMI) is due to not only genetic condition, but also unhealthy diet and lifestyle have been demonstrated [19]. As people living in the same community share the same geographical features, climate, and traditions, it is possible that their constitutions and diseases are as well similar; an even stronger influence is observed within families. During health consultations related to genetics, public health nurses perceived the residents’ symptoms, and diseases were not limited to “genetic”. Public health nurses are able to understand these situations because they adopt a broad comprehensive view of the targets of their nursing practice such as families and communities.

In Turkey, public health nurses are involved in genetic counseling because there are no genetic counselors or genetic nurses [20]. At the same time, public health nurses in Japan were in charge of family planning such as determining the number and spacing of one’s children through birth control, genetic consultation, and training [21]. Ever since hospitals began conducting genetic diagnoses, public health nurses have not been involved because all duties associated with ‘genetic counseling’ were deemed consultations related to ‘gene diagnosis’. Because of the widespread availability of genetic testing, public health nurses may become involved in primary genetics counseling prior to genetic testing, delivery of genetic information, and consultation to enhance health promotion (Category II). This is in support of a widespread view of genetic diseases.

Originally, the roles of public health nurses are included advocacy and educating the community [22, 23]. The role of public health nurses in promoting human genetic diversity is very important. With the team approach adopted in genetic services, there are high expectations for community healthcare providers, including public health nurses [14]. The public health nurses will be able to provide basic knowledge and information on human genetics to their clients regarding their underlying genetic concerns.

Public health nurses noted that there are various levels in genetic education. For instance, the knowledge should be learned as a part of the mandatory nursing education system and to be acquired at a specialized level (Category III). Human genetic diversity should be learned from a young age, when minds are flexible and free of prejudice, not after children have grown into adults (Subcategory III-1). Studies have shown that many people in the community lack of more ethical issues compared with scientific knowledge [24]. In addition, lower level of genetic knowledge is related to older age and lower education level [24, 25]. The consequences of misconceptions of the general people are based on (i) a lack of formal scientific education, and (ii) the poor coverage of genetics in the media and on the Internet [23]. This opinion was shared by many other public health nurses. All children have an equal level of education. With the minimal influence of the media and Internet, children can learn free of prejudice. When children learn accurate information and pass it to adults, misunderstandings of genetic information in adults may decrease [26]. It is very important to learn from a young age, not only scientific knowledge, but also genetic education that includes ethical issues.

In the future, there will be a growing need for healthcare providers and specialist who have roles in interpreting genomic information for the general public as well as disseminating and promoting accurate information [27, 28]. Public health nurses need to acquire specialized genetic education through not only mandatory education, but also basic training, in order to become a public health nurse (Subcategory III-2). The American Nurses Association and the International Society of Nurses in Genetics have defined the need for nurses to acquire genetic knowledge as: “Nurses require genetics and genomics knowledge to identify, refer, support, and care for persons affected by, or at risk for, manifesting or transmitting conditions or diseases with a genetic component” [29].

Various other countries such as Taiwan, Italy, and Turkey acknowledged the need to incorporate genetics in nursing education [20, 30]. However, genetic education levels in nursing were found to be low because of deficiencies in nursing curricula and the lack of course content in nursing schools [31]. While public health nurses understood the need for genetic knowledge pertaining to nursing, they were also aware of the reality that the education system is not fully in place. On top of their specialized training as students, public health nurses felt the need to acquire more constructive genetic knowledge to assist them in practical connections with support services as part of their nursing duties (Subcategory IV-1). On the other hand, as genetic knowledge is rarely utilized in actual practice (Subcategory IV-2), it will be very difficult to spend sufficient time studying after graduation. Internet-based genetic education programs for various targets, such as nurses, university faculty members, and nursing students, are offered as resources from many organizations in the US, Australia, the UK, and other countries around the world [32]. By using these online resources, public health nurses can always acquire the latest information. Using globally available online resources as a foundation, there is also a need in Japan to develop resources that serve to the practical duties of public health nurses. As genetic knowledge is rarely utilized in the actual practice of public health nurses, the idea was raised to develop ‘resources that one could use as references or models when needed, such as case study collections or manuals’. The challenge will be to prepare easily accessible resources related to rare diseases that could be used together with general people. There is an expectation for not only resources, but also the availability of advisors that could ‘help answer questions when confronted with actual difficult cases’ (Subcategory IV-3). This issue could be resolved by cooperating with genetic counselors or certified nurse specialists currently handling ‘genetic counseling’. Public health nurses could work at comfort if all countries had specialized organizations such as the UK’s Genetics/Genomics Competency Centre (G2C2) and Genomics Medicine Centres (GMCs).

The results of the present study were based on the work experiences of the study participants. As the study targeted a limited number of participants in one municipality, there is a need to continue the further investigation by combining the present findings with quantitative research in different communities without biases.

Public health nurses whose professional duties do not directly relate to genetics were exposed to genetics-related episodes on a regular basis without their awareness. The sharing of precise facts and understanding regarding human genetics by public health nurses would also contribute an opening for clients to be communicated concerning their hidden genetic issues. As a result, there is a need for practical resources, the establishment of collaboration networks, and the development of professional organizations for public health nurses to identify potential risks.