To provide a context for the responses from the survey, we present the profiles of each of the countries represented (Table 2). Building on the work of Robinson and Griffiths (2007), these profiles outline key features of preregistration nurse training and information about the status of genetics services, genetics nursing, and genetics nursing societies. Exemplars from three of these countries review progress made in developing competence in genetics-genomics for nurses working in the specialty (nursing in genetics) and for all other nurses who work outside the specialty (genetics-genomics in nursing).
The United States has 3,063,163 licensed registered nurses, prepared with a diploma (13.9%), associate (36.1%), baccalaureate (36.8%), or any advanced degree (13.2%; U.S. Department of Health and Human Services, 2010). Regardless of academic training, the common measure of knowledge, skills, and abilities essential for safe and effective entry-level nursing practice is passage of the National Council Licensure Examination (NCLEX), a prerequisite for licensure to practice (National Council of State Boards of Nursing, 2010). Specialty credentialing is handled with certification examinations or portfolios, as are advanced practice specialty credentials in addition to an advanced academic degree.
The American Nurses Association (ANA), representing the entire U.S. nursing discipline, develops and maintains scopes and standards of nursing practice for both the generalist, advanced practice, and 28 nursing specialties. Standards are authoritative, evaluable statements for which nurses are held accountable (ANA, 2010). Individual state nurse practice acts further refine these to specify the state's legal scope and standards for practice. The subspecialty of genetic nursing consists of licensed nurses with specialty education and training in genetics and genomics with the scope and standards of practice defined by ISONG (2007). They are specific to the subspecialty and do not reflect nurses integrating genetics-genomics into routine practice. ISONG serves as the specialty's professional society in the United States.
Specialty genetic services are staffed by nurses, physicians, or genetic counselors. Traditionally, services have focused on providing consultations for persons with dysmorphology, congenital, or single gene disorders. Over the past 10 years there has been considerable expansion in the laboratory, diagnostic, counseling, and case management and treatment services for a growing number of conditions, including adult-onset disorders such as cancer and cardiovascular diseases.
Translation of genetics-genomics into general health care is actively occurring. Risk identification and testing services are increasingly provided in oncology and primary care settings, for example. Genetic-genomic information and technologies are part of cancer screening, prognosis, and treatment services delivered by oncology physicians and nurses.
In light of evidence that U.S. nurses have a limited genetics-genomics knowledge (Harvey et al., 2007) and the implications for all nurses, two National Institutes of Health Institutes (government) partnered to establish the Genetic-Genomic Nursing Competency Initiative (GGNCI). Outputs from GGNCI included consensus development of the Essentials of Genetic and Genomics Nursing: Competencies, Curricula Guidelines, and Outcome Indicators (Jenkins & Calzone, 2007). The competencies apply to the entire nursing workforce irrespective of academic preparation, role, practice environment, or specialty.
A 5-year strategic plan focusing on practicing nurses, regulation, academics, and infrastructure has guided the competencies implementation. Projects from each priority have been implemented: (a) integrate genetics-genomics into academic entry-level academic nursing accreditation standards, (b) define competency-specific outcome indicators, (c) establish a faculty resource toolkit, and (d) develop an instrument to measure nursing genetic-genomic competency and practice integration.
Each effort has been linked. Input by the GGNCI and competency consensus nursing community resulted in integration of genetics-genomics into the American Association of Colleges of Nursing Baccalaureate Essentials (American Association of Colleges of Nursing, 2008). These essentials form the basis for the Commission on Collegiate Nursing Education baccalaureate accreditation standards motivating faculty to integrate genetics-genomics into their curricula. Hence, faculty needed genetic-genomic education resources, provided by the GGNCI toolkit project, the Genetic-Genomic Competency Center for Education (G2C2; http://www.g-2-c-2.com). G2C2 maps peer-reviewed resources to competencies, specific areas of knowledge, and performance indicators. Lastly, a survey instrument was developed, pilot tested, then utilized to conduct a U.S. nursing workforce study examining genomic competency to inform education initiatives and track effectiveness (Calzone, Jenkins, Yates, Cusack, & McBride, 2008).
In Japan, nursing graduates are eligible to sit for a national examination that leads to registration as a nurse, nurse-midwife, or public health nurse. Genetics is included within this examination; however, it is not a compulsory component within nursing curricula at any educational institution. In addition, genetics is currently not considered a component of general nursing care. For example, a nurse would not be expected to perform a genetic family history assessment while providing respiratory care to an individual with muscular dystrophy or while caring for someone with a potentially inherited form of breast cancer.
As proposed in the World Health Organization (1998) guidelines, specialist genetic services within Japan are organized at all levels of medical care and delivered by multidisciplinary teams, which include nurses. The role of the nurse in delivery of these services varies according to local (institutional) need. In most cases, nurses who have received specialist genetics-related training (genetic nurses) will support the clients through decision-making processes and provide ongoing care for families diagnosed with a genetic condition.
Genetics counseling is delivered through the overlapping roles of doctors, nurses, and genetic counselors and requires specialist (advanced-level) training. While there is no formal regulatory body akin to the U.K. Genetic Counsellor Registration Board (detailed below), those involved in the service are often members of the Japan Society of Human Genetics or the Japanese Society of Genetic Counselling (JSGC). Training to become a recognized genetic counselor, available to both medical and nonmedical graduates (including those with psychology and sociology backgrounds), is provided by graduate schools, with final certification by the JSGC.
Nursing competencies for delivery of genetic-genomic health care have been defined through a consensus process with those working in specialist genetics services and encompass basic (required of all nurses) and advanced levels (required of genetic nurses; Arimori et al., 2007). These guidelines are promoted by the Japanese Society of Genetic Nursing for clinical and research use. Requirements for the advanced role have been defined at workshops with various societies, and two graduate schools are currently working toward establishing genetic nursing as a recognized field alongside other related subspecialties (such as cancer and pediatric nursing), and for certification as a certified nurse specialist (CNS) with the Japan Nursing Association.
Formal nurse training was established in the United Kingdom in 1860, but professional regulation was not introduced until 1919, when parliament passed the Nurses Registration Act (http://www.nmc-uk.org). Today, the Nursing and Midwifery Council (NMC) is responsible for professional regulation, with over 660,000 qualified nurses and midwives on its register. Nurses must achieve the NMC standards of proficiency in the context of practice in one of four branches (adult, mental health, learning disabilities, or children's nursing). These mandatory standards define the overarching principles underpinning nursing practice, the context in which they are achieved, and the scope of professional practice (NMC, 2010). These recently revised standards now require nurses to take account of genetic factors alongside others in conducting a comprehensive nursing assessment, but there is no further elaboration on this.
Despite the lack of recognition for genetics-genomics as part of safe and effective practice within the current NMC standards, the role of nurses within specialist genetics services is well established. The first genetics clinics were established in the 1940s (Skirton, Arimori, & Aoki, 2006). Today genetics services are organized via 27 regional clinical genetics centers, serving populations of 3 to 5 million. They operate as part of the publicly funded National Health Service (NHS) and each offers a range of diagnostic, laboratory, and counseling services for people and families with, at risk for, or susceptible to a genetic condition. Nurses were established as members of the multiprofessional specialist teams in the 1970s. Initially engaged to support the medical team, they became increasingly autonomous, with roles involving direct client contact, education, research, and psychotherapeutic counseling. In 1979 they formed a professional society, renamed the Association of Genetic Nurses and Counsellors (AGNC) in 1994, today with over 300 members. The role of genetic counselor and standards of competence have been defined by the AGNC (Skirton et al., 1998). Registration was established in 2001, available to qualified nurses and midwives, or graduates with a master's degree in genetic counseling, by submission of a portfolio to the Genetics Counselling Registration Board.
Competencies in genetics were developed for all nurses and midwives in 2003, in recognition of the inadequacies of genetics education provision in nurse training (Kirk et al., 2003). Seven competence statements accompanied by learning outcomes and practice indicators were established through a national consensus process. These set out the minimum standards that should be demonstrated by nurses at the point of registration. Although the NMC endorsed the framework, they remain as guidelines only. AGNC members played an important role in leading this work, contributing to the development of the education-based competence framework and to its dissemination.
A strong political drive undoubtedly has helped the development and gradual adoption of the competence framework. The genetics White Paper and its subsequent review (Department of Health, 2003, 2008) highlighted health professional education as a key priority, providing funding to establish the NHS National Genetics Education & Development Centre to lead and coordinate this. The “public voice” of Genetic Alliance UK also plays a key role in raising awareness of the needs of individuals and families affected by genetics, campaigning to influence policy and care provision (http://www.geneticalliance.org.uk).