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Keywords:

  • Genetics;
  • genomics;
  • competence;
  • regulation;
  • nexus;
  • nursing education;
  • nursing licensure

Abstract

  1. Top of page
  2. Abstract
  3. Global Perspectives of Progress on Genetics-genomics in Nursing
  4. Establishing Competence Standards—Exemplars
  5. Factors Influencing Competence Standards and Regulation
  6. Toward a Framework for Development
  7. Conclusions
  8. Acknowledgments
  9. Clinical Resources
  10. References

Purpose: The aim of this article is to explore the interaction between the integration of genetics-genomics competencies into nursing curricula and regulatory standards. By taking a global perspective of activity in this field, we aim to develop a framework that can inform strategic planning in relation to international genetics-genomics and nursing education.

Methods: We focus our exploration around a small-scale international survey on the progress, achievements, and critical success factors of 10 countries in relation to the integration of genetics-genomics into nursing education, with exemplars from three of those countries.

Findings: Analysis of the data generated 10 themes, each with several subthemes that play a critical role in the development of genetics-genomics in nursing education and practice. The themes were organized into three overarching themes: nursing in genetics, genetics in nursing, and recognition and support. Genetics-genomics competence is not fully integrated into nursing education at an appropriate level in any country, nor was it reflected robustly in current standards for registration and licensure.

Conclusion: Strong leadership from the specialist genetics community plays a critical role in defining genetics-genomics competence but the engagement of nursing professionals at senior levels in both government and regulatory institutions is essential if nurses are to be active participants in the innovations offered by genomic healthcare.

Clinical Relevance: Safe and effective nursing practice must incorporate the needs of those with, at risk for, or susceptible to genetic-genomic conditions, as well as those who might benefit from the application of genomic technologies in the diagnosis and management of common conditions such as cancer and heart disease. The scope of such practice can be articulated though competence statements. Professional regulation defines the standard of competence that practicing nurses should demonstrate at initial registration and licensure.

Regulation of the nursing profession, encompassing the key pillars of governance, discipline, and education, is fundamental to the identity, structure, and type of services a nurse can offer (International Council of Nurses [ICN], http://www.icn.ch/pillarsprograms/regulation/). Registration, incorporating licensure, is an important aspect of regulation and provides the route of entry to the profession. The ICN states that since the need for nursing services is universal and the same wherever it is delivered, the principles that govern nursing education and practice should be the same in every country. Affara (2005) reaffirmed the importance of regulation in 21st century nursing and contended that nurses, as experts in their field, can influence their contribution to global health care through setting universal standards of excellence in education and practice. However, in their comparative analysis of the key regulatory dimensions over 172 jurisdictions worldwide, Morrison and Benton (2010) reported that while regional similarities may be apparent, many contrasts are also revealed. They concluded that the equivalence of role, education, or practice standards cannot be assumed from the title of registered nurse. A more focused approach in a systematic documentary evaluation of five Western countries in relation to regulation found no single uniform system of routes of entry to the profession, nor consensus on an optimal model for initial training (Fealy et al., 2009).

Competence is a core component of registration, both in terms of establishing agreement on what constitutes competence to practice and in ensuring that nurses who are licensed to practice are able to demonstrate the defined level of competence (Pearson, 2005). The relationship between the establishment of competence statements and regulation is thus an important one, even more so when we consider the dynamic field of genetics-genomics and its current and future impact on health care in the 21st century. If nurses are to deliver safe, quality care, they need to be able to demonstrate competence in genetics-genomics as it applies to their practice specialty. In this fast-moving area of health care, which should come first—agreement on the level of competence to be demonstrated or a regulatory standard that requires competence in genetics-genomics? Is the identification and agreement on competence statements a driving force (driver) for their inclusion in regulation standards?

In this paper we aim to explore the relationship between the development of competence statements and requirements for regulatory compliance to identify the relevant knowledge and skills in genetics-genomics. We will outline the findings from a small-scale international survey about progress in integrating genetics-genomics into nursing practice and education, to provide the broader context for three exemplars from the United States, Japan, and the United Kingdom. We shall outline some of the drivers and detractors to the development of competence statements in genetics-genomics and their recognition within national regulatory frameworks. Finally, we present a model that describes the interfaces between genetics-genomics and nursing: the genetics-genomics and nursing nexus.

Global Perspectives of Progress on Genetics-genomics in Nursing

  1. Top of page
  2. Abstract
  3. Global Perspectives of Progress on Genetics-genomics in Nursing
  4. Establishing Competence Standards—Exemplars
  5. Factors Influencing Competence Standards and Regulation
  6. Toward a Framework for Development
  7. Conclusions
  8. Acknowledgments
  9. Clinical Resources
  10. References

Kirk, Lea, and Skirton (2008) found that the issues around the utilization of genetics-genomics in clinical practice are common across several countries. A convenience sample (N= 77) of members of the International Society of Nurses in Genetics (ISONG) identified the ineffective presentation of genetics-genomics as a major barrier in making clear its relevance to nursing practice. The authors drew attention to the value of competence frameworks in helping to address this, through informing professional development and appropriate standards for care, citing the U.K. and U.S. genetics-genomics competence statements as examples (Jenkins & Calzone, 2007; Kirk, McDonald, Longley, & Anstey, 2003). In order to explore the potential influence of competence statements further, in June 2009 we conducted a small scale survey.

Survey Aims

Our aim was to gain a perspective from genetics nurse leaders across several countries. We sought information and views on the progress, facilitators, and barriers to embedding genetic-genomics in nursing education and practice, in order to identify common critical success factors.

Approach

One to two nurse leaders from each of the 12 countries represented in the 2009 ISONG membership list, selected on the basis of authority according to position and/or publication record (n= 19), were contacted by e-mail and invited to respond to a short survey. Additional responses were sought via a closed international e-mail network of genetics professionals (the Community Genetics Network). Respondents were encouraged to discuss their responses to 10 questions with colleagues prior to submitting by e-mail directly to the first author, or online via a dedicated web link if they wished to remain anonymous. Consent was deemed to have been given if the participant actively responded to the survey. Ethics approval for the survey was granted by the University of Glamorgan.

We used open questions to ask about current progress and significant achievements in genetics-genomics and nursing in their country within the last 3 years, the driving forces behind these, the next three steps that needed to be taken and the likely time scales for these, the organizations that would need to be engaged to facilitate their achievement, and significant barriers to success. Finally, participants were asked to comment on the status of genetics-genomics in relation to current professional regulatory requirements. Free text responses were collated, subjected to thematic analysis, coded, and hand-sorted by manuscript authors.

Results

We received 13 responses from 10 countries. Results from countries where there were two responses were merged as in each case responses were in agreement. Genetics competence is not included within the regulatory standards of six countries and is explicit in only one country, although this is defined as “only at the basic level.” The items generated in response to “significant achievements” and “next steps” are presented along with the time scale and potential drivers identified (Table 1). The items were coded to 10 themes, each with a number of subthemes; these are discussed later. The specialist professionals themselves were cited most often as main drivers to the achievements, either through individual initiatives or as part of a professional society. The value of the “public voice” was evident, along with political drivers such as key policy and funding support. Progress itself was seen as a change agent, for example, through the drive to enhance quality in healthcare, through the increasing application of genomic medicine in healthcare, or as a result of the processes involved in the development of competence statements. In contrast, government and regulatory bodies were most often cited as organizations that could make a significant contribution to progress but had not yet done so.

Table 1.  Survey Items Generatedon Perspectives on Progress in Integrating Genetics-Genomics Into Nursing
CountrySignificant achievementsNext stepsTimescale (years)Drivers: Who could make a difference
  1. Note. For the purposes of this table, ‘genetics’ refers to genetics-genomics.

  2. SGN = specialist genetics nurse (including those nurses who might be designated as genetic counselors).

ItalyCompetencies defined Development of SGN role Development of SGN training programme Critical mass formedEducation support for SGN role Further development of critical mass Raise awareness of SGN role with policy-makers1–10Patient organizations, regional governments, genetics specialists
UKCompetencies defined Support for education Government policy & funding supportEducation support in the practice setting for qualified nurses (also to act as mentors) Incorporate skills assessment into standards National Steering Group for education1–3Professional & regulatory bodies, education providers, healthcare commissioners
PakistanCurriculum presence Increased public awareness Clinical impact evidentIncreased content in nursing curricula Support for education Support from policy-makers1–3Government, regulatory body
The Nether-landsEducation support in practice Curriculum presence Development of SGN training programmeFurther develop genetics education Increase awareness of role of nurses in genetics Increasing application of genomic medicine in public health1–10Government, public health services, primary care doctors
BrazilDevelopment of genetics services Increased awareness of SGN role Professional Society establishedCompetencies defined Education (to raise awareness) Education content kept up to date3–5Professional organizations, education providers
USACompetencies defined Competencies inform accreditation Funding support for nursing researchBuilding the evidence base Demonstration of competence within regulatory requirements Building nursing research2–3Other accrediting bodies
OmanIncrease in professional awareness Critical mass of enthusiasts Government support for researchCurriculum presence Specialist service development Involving clinical staff in education1–2Government, college of medicine
JapanProfessional society self-sustaining Development of SGN training programme Inclusion of genetics in professional standardsSpecialist role consolidated via formal qualification Integration of genetics into basic training Increase professional awareness3–5Professional society
South AfricaCurriculum presence Development of specific content for primary care nurses Increased professional awarenessIncreased genetic content across all nursing curricula Introduction of a formal qualification for genetics nurses Continuing professional development (CPD) that includes genetics for all nurses1–5Regulatory body, education leads
IsraelDevelopment of “genetic information nurse” role Introduction of SGN role to genetics clinics Curriculum presenceAdvanced education Integration of genetics into the nursing role Recognition of expertise of SGN1–10Lead nurse in government department

Genetics-genomics competence was not felt to be fully integrated into nursing education at an appropriate level in any country. The significant barriers to progress in fully integrating genetics-genomics into nursing education could be grouped into five categories: (a) deficits in awareness and knowledge among educators and practitioners (including those at senior levels) result in a lack of professional engagement in genetics-genomics; (b) lack of awareness at government and regulatory body levels; (c) limitations in resources included time, funding, availability of appropriate education resources, and capacity to deliver genetics-genomics education; (d) lack of attention paid to the “patient voice;” and (e) lack of outcome evidence, compounded by the limited integration of genetics-genomics into practice.

Limitations

The intention of this small-scale survey was to seek the views of nurse leaders active in developing genetics-genomics practice; as such, it is their subjective perspectives that have been captured. Although common themes have emerged, the sample is not representative of all nurses practicing in the genetics specialty.

Establishing Competence Standards—Exemplars

  1. Top of page
  2. Abstract
  3. Global Perspectives of Progress on Genetics-genomics in Nursing
  4. Establishing Competence Standards—Exemplars
  5. Factors Influencing Competence Standards and Regulation
  6. Toward a Framework for Development
  7. Conclusions
  8. Acknowledgments
  9. Clinical Resources
  10. References

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).

Table 2.  Key Features of Preregistration Nurse Training and Status of Genetics-Genomics and Nursing Across 10 Countries
CountryLevels of nurseaFirst level nurse: training to registrationGenetics
Sector in which training takes placeLength (years)QualificationGeneral/specialistSpecialist genetics serviceSpecialist genetics nurse roleGenetics nursing society
  1. aCountries may offer one or two levels of nurse training programs. Where two are offered, second-level nurses (sometimes called nurse assistants or licensed practical nurses) may be able to upgrade to the first level with further training.

  2. HE = higher education; FE = further education.

Brazil2HENursing college4DegreeGeneralYesYesYes
University      
Israel2FEHospital-based school3DiplomaGeneralYesNoNo
HEUniversity4Degree    
Italy1HEUniversity3DegreeGeneralYesYesNo
Japan2HEUniversity4DegreeGeneralYesYesYes
Nursing college3Ass. degree    
School of nursing3Diploma    
Netherlands2HESchool of nursing4DegreeGeneralYesYesYes
Oman2FESchool of nursing3DiplomaGeneralYesNoNo
HEUniversity4Degree    
Pakistan2FEHospital-based school3DiplomaGeneralNoNoNo
HEUniversity3Diploma    
  4Degree    
South Africa2FENursing college4DiplomaGeneral/Yes butLimited.No
 Hospital/clinic  specialistlimitedNot specifically 
 School of nursing  specialist for nurses 
HEUniversity4Degree    
UK1HEUniversity3Diploma/degreeBranchYesYesYes
United States2HEUniversity4DegreeGeneralYesYesYes
Community college2Ass. degree    
School of nursing3Diploma    

United States

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).

Japan

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.

United Kingdom

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.

The competence statements have been used to inform the development of core competencies for nurses in Europe (Skirton, Lewis, Kent, & Coviello, 2010). Although used to guide U.K. nursing curricula, they are not yet fully implemented (Kirk & Tonkin, 2006). Following consensus review in 2010, the statements have been revised and an additional statement has been included (NHS National Genetics Education & Development Centre, 2010).

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).

Factors Influencing Competence Standards and Regulation

  1. Top of page
  2. Abstract
  3. Global Perspectives of Progress on Genetics-genomics in Nursing
  4. Establishing Competence Standards—Exemplars
  5. Factors Influencing Competence Standards and Regulation
  6. Toward a Framework for Development
  7. Conclusions
  8. Acknowledgments
  9. Clinical Resources
  10. References

The stories told in the survey responses and exemplars indicate similar trajectories toward a regulatory standard that incorporates competence in genetics-genomics, albeit at different paces. Some countries that are close to achieving the incorporation of genetics-genomics competencies into regulation standards demonstrate features that other countries aspire to achieve. These factors relate to the status of genetics services within health care and the subsequent establishment of the specialist genetics nurse role. This, along with formation of the specialist professional community as a recognized body, appears to be a critical factor associated with the integration of genetics-genomics into other nursing specialties. Recognition and support from policymakers, the public, and other professionals are another critical factor.

The interrelationship between genetics-genomics and nursing may be conceptualized as a nexus, where each quadrant reflects a connection between these two parameters (Figure). Ideally, nursing would be located in both upper quadrants (A and B), where the expertise of the specialist genetics nurse is formally recognized alongside nurses in other specialties who are competent in genetics-genomics to a safe and appropriate standard. Applying this to the three exemplar countries, the United States has met quadrant A and is actively transitioning into quadrant B as competencies have been established for genetics-genomics but are inconsistently integrated into scopes and standards of practice except for specialty services. Progress barriers include inadequate funding limiting GGNCI staff, resources, and projects.

image

Figure Figure. Trajectories for the development of genetics-genomics in nursing education and practice The 10 themes are grouped under the three over-arching themes. Each theme has several sub-themes. Note. For the purposes of this table, “genetics” refers to genetics-genomics. Italic entries indicate critical trigger points in each theme. SGN = specialist genetics nurse (including those nurses who might be designated as genetic counselors); CPD = continuing professional development.

Download figure to PowerPoint

Japan is within quadrants A and moving toward B. Genetics education for the nursing professions is still not well established, and the opportunities to practice as a genetic nurse are limited. Defining the independent and collaborative characteristics of the nursing role within multidisciplinary teams delivering genetic health care, and clarifying the roles and boundaries of genetic counselors and genetic nurses, are important next steps in moving forward the genetics-genomics agenda. The future challenges for Japan are (a) to propose that genetic nursing be incorporated as an essential requirement in the national examination for nurses, and (b) to work with the regulatory framework to ensure that the role of genetic nurses is appropriately recognized and articulated.

The United Kingdom has made steady progress and could be placed in quadrants A and moving toward B. The new NMC standards (NMC, 2010) may make some contribution to progress toward quadrant B through their reference to genetics in the context of nursing assessment. That there has not been explicit reference until now has compromised progress.

The nexus could be applied to locate the other seven countries. Pakistan and Oman are within quadrants C and D. Israel and South Africa are also located in C and D, with some evidence of transition toward A and B. Both Italy and Brazil appear to be consolidating their location within A, and the Netherlands is in a position similar to that of the United Kingdom, United States, and Japan.

We propose that the nexus may provide a useful approach to articulating the current status of genetics-genomics and nursing within a professional jurisdiction. A further conceptualization of the themes and subthemes that emerged from the survey, in the context of the exemplars, may provide a framework for progression between quadrants in this nexus.

Toward a Framework for Development

  1. Top of page
  2. Abstract
  3. Global Perspectives of Progress on Genetics-genomics in Nursing
  4. Establishing Competence Standards—Exemplars
  5. Factors Influencing Competence Standards and Regulation
  6. Toward a Framework for Development
  7. Conclusions
  8. Acknowledgments
  9. Clinical Resources
  10. References

The 10 themes identified from the data were further categorized under three overarching themes: nursing in genetics (i.e., nurses who work in the subspecialty of genetics); genetics in nursing (i.e., nurses who incorporate genetics-genomics into routine practice); and recognition and support. Within this framework, the subthemes were hand sorted by one author and verified by a second, to reflect the trajectories indicated by the survey responses and exemplars (Table 3). These trajectories follow the transitions from adoption, through early implementation, to persistence as evidence is translated and embedded into practice (Tansella & Thornicroft, 2009). Transition may occur within and across the overarching themes of nursing in genetics and genetics within nursing, the former influencing the latter. Transitions within a theme may also occur in tandem with other themes. Recognition and support may act synergistically to influence the transitions within the overarching theme and across other themes. This overarching theme indicates the importance of key stakeholders in successful implementation of an innovation (Kitson, 2009). Critical trigger points in each theme (shown in italics) are also postulated as catalysts, reflecting the importance of the specialist nursing role, education, and nursing regulation in influencing progress in the advancement of genetic healthcare.

Table 3.  Trajectories for the Development of Genetics-Genomics in Nursing Education and Practice
  1. Note. For the purposes of this diagram, ‘genetics’ refers to genetics/genomics.

  2. A nexus describes a series of connections, in this instance, between genetics/genomics and nursing, at the interfaces with specialist and generalist practice, and competence standards.

  3.  A: Genetics standards for specialist nursing are agreed and articulated.  Role within a clinical service is defined.  Specialist genetics professional association is established.

  4.  B: Role of genetics within all other fields of practice is acknowledged via national regulatory standards.  A specialist genetics component within other specialties may be defined and specialist interest groups may be established (e.g., cancer genetics nurses).

  5.  C: Role of nursing in genetics services may be identified but there are no agreed national standards.  Uptake and interpretation of the role is dependent on local interest and enthusiasm.

  6.  D: Role of genetics in nursing practice has not been identified or is inconsistent and subject to local interest, interpretation and priorities.

  7. The 10 themes are grouped under the three over-arching themes. Each theme has several subthemes.

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The framework reflects the complexities of an innovation process and outlines a wider context to consider the interactions between people (policymakers, professional, and public), policy, and practice. We suggest that the framework may inform a strategy for the persistence of genetics-genomics in nursing practice, recognizing the role of regulation in promoting safe and effective care through competent practice.

Conclusions

  1. Top of page
  2. Abstract
  3. Global Perspectives of Progress on Genetics-genomics in Nursing
  4. Establishing Competence Standards—Exemplars
  5. Factors Influencing Competence Standards and Regulation
  6. Toward a Framework for Development
  7. Conclusions
  8. Acknowledgments
  9. Clinical Resources
  10. References

The challenges to producing a “genetically-genomically competent” nursing workforce remain significant at national and international levels. Strong leadership and an international community of practice play critical roles in the articulation of competencies, but the engagement of nursing professionals at senior levels in both government and regulatory bodies is essential if nurses are to be active participants in the innovations offered by advances in genomic healthcare.

Acknowledgments

  1. Top of page
  2. Abstract
  3. Global Perspectives of Progress on Genetics-genomics in Nursing
  4. Establishing Competence Standards—Exemplars
  5. Factors Influencing Competence Standards and Regulation
  6. Toward a Framework for Development
  7. Conclusions
  8. Acknowledgments
  9. Clinical Resources
  10. References

The NHS National Genetics Education & Development Centre is funded by the Department of Health. Naoko Arimori is supported by a Grant-in-Aid for Scientific Research (A) No. 12307059 from the Japan Society for the Promotion of Science. The U.S. Genetic-Genomic Nursing Competency Initiative is supported by the National Institutes of Health, National Human Genome Research Institute, The Office of Policy, Communications and Education (OPCE), Genomic Healthcare Branch; National Cancer Institute, Center for Cancer Research, Genetics Branch; and the Office of Rare Disease; as well as in-kind support from the American Nurses Association and the American Association of Colleges of Nursing. Thanks to Dr. Juping Yu for her help in compiling Table 2 and to those who participated in the survey.

References

  1. Top of page
  2. Abstract
  3. Global Perspectives of Progress on Genetics-genomics in Nursing
  4. Establishing Competence Standards—Exemplars
  5. Factors Influencing Competence Standards and Regulation
  6. Toward a Framework for Development
  7. Conclusions
  8. Acknowledgments
  9. Clinical Resources
  10. References
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