The Nurse Is Reviewing Concepts of Gene Therapy

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Nurs Outlook. Author manuscript; available in PMC 2011 Jan i.

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Nurses Transforming Health Care Using Genetics and Genomics

Kathleen A. Calzone, MSN, RN, APNG, FAAN,ⁱ Ann Cashion, PhD, RN, FAAN,² Suzanne Feetham, PhD, RN, FAAN,ⁱⁱⁱ Jean Jenkins, PhD, RN, FAAN,⁴ Cynthia A. Prows, MSN, CNS, FAAN,⁵ Janet K. Williams, PhD, RN, PNP, FAAN,^half-dozen and Shu-Fen Wung, PhD, RN, ACNP, FAHA, FAAN^vii

Kathleen A. Calzone

^one National Institutes of Health, National Cancer Institute, Eye for Cancer Enquiry, Genetics Co-operative, Bethesda, MD

Ann Cashion

ⁱⁱ Acute and Chronic Care Department, Academy of Tennessee Health Science Center, Memphis, TN

Suzanne Feetham

ⁱⁱⁱ College of Nursing, University of Wisconsin-Milwaukee, Milwaukee WI; Nursing Research Consultant Children's National Medical Center, Washington, DC

Jean Jenkins

^iv National Institutes of Health, National Human Genome Research Establish, Bethesda, Dr.

Cynthia A. Prows

^v Divisions of Patient Services and Human Genetics, Children'southward Hospital Medical Middle, Cincinnati, OH

Janet Thousand. Williams

^{half dozen} College of Nursing, The University of Iowa, Iowa Metropolis, IA

Shu-Fen Wung

⁷ Higher of Nursing, The University of Arizona, Tucson, AZ

Introduction

• Nurses are well positioned to incorporate genetic and genomic information beyond all aspects of the United States (U.Due south.) wellness intendance organization.

• Nurses, the about trusted wellness professionals [1], brand unique contributions to the field of human genetics and genomics and complement the work of other health care providers to meliorate the health of the public.

Health care benefits profoundly from the unprecedented and ongoing work elucidating the genetic/genomic basis of health, illness, illness risk, and treatment response. The progress in genetics and genomics is applicable to the entire spectrum of health care and all health professionals and as such to the entire nursing profession (2.9 1000000) [2] in the Usa regardless of function, clinical specialty, or academic preparation. The majority of illness take a chance, health weather condition and the therapies used to treat those weather condition accept a genetic and/or genomic element influenced by environmental, lifestyle, and other factors therefore impacting the entire nursing profession [three]. Nurses have intimate knowledge of the patient's, family's, and community's perspectives; an understanding of biologic underpinnings; experience with genetic/genomic technologies and data; skills in communication and edifice coalitions; and most chiefly, the public'south trust. Across the lifespan, nursing focuses on health promotion and disease prevention, which is an integral component of genetic/genomic health intendance practices. Awareness of nurses' strengths and skills, together with the recognition that prevention is the hallmark of genetic/genomic health care, will inform public policymaking groups equally they address problems that affect heath intendance practice in the area of genetics/genomics. Policy making process will be informed with new insights volition be gained with inclusion of nurses and professional person nursing organizations. These policies tin can facilitate the ability of U.Southward. wellness care systems to employ genetic/genomic knowledge to promote health and manage disease.

The Potential of Nurses Using Genetic and Genomic Information to Optimize Quality Health Care Outcomes

• The nursing profession is a pivotal provider of quality health care services and is essential to endmost the gap between enquiry discoveries that are efficacious to health care and their successful adoption to optimize health.

In order for people to benefit from widespread genetic/genomic discoveries, nurses must be competent to obtain comprehensive family histories, place family members at chance for developing a genomic influenced condition and for genomic influenced drug reactions, help people make informed decisions about and empathise the results of their genetic/genomic tests and therapies, and refer at-take chances people to appropriate wellness care professionals and agencies for specialized intendance.

The tiptop ten leading causes of mortality in the U.s. in 2005 (Figure 1) [4] all have a genetic and/or genomic component with heart affliction, cancer, cerebrovascular illness, and diabetes representing the vast majority of mortalities. Due to the chronic nature of these weather and the management needed, nurses are intimately involved in the ongoing handling and management of these conditions.

Every year, over 106,000 people in the U.S. will dice from adverse furnishings from medications prescribed and administered in correct dosages, and over two meg will endure serious simply not life threatening toxicities[5]. Advanced practice nurses prescribe and all nurses regardless of their level of preparation dispense medications every bit well equally provide educational activity, monitor persons using medications, and are often the starting time line of defense to initiate deportment to preclude adverse drug effects.

Amid individuals 65 years of historic period or older, 17.3% of agin drug result emergency department visits were associated with warfarin (Coumadin), the bulk of which were dose-related with 44.2% requiring hospitalization [6]. Individual genetic markers are amidst the factors that contribute to the decision of warfarin (Coumadin) dose requirements [7]. Translating information about the genetic markers into the clinical arena, where warfarin (Coumadin) dosing and maintenance monitoring have a stiff nursing component [viii, nine], can reduce the incidence of life threatening hemorrhage or sub-therapeutic dosing that can outcome in thrombosis (clot forming in the trunk such equally lungs and brain) as a issue of individual responses regulated by genetic makeup.

Despite a burgeoning body of evidence regarding the contribution of genetics and genomics to health or illness, the bear witness specific to outcomes of genomically competent nursing practice and the impact on the public's health is extremely express—if not entirely absent. Yet, individual anecdotes point to the remarkable potential for transforming health care by the genomically competent nurse.

• Nurses knowledgeable about genetics/genomics and skilled at obtaining and assessing risk in a family history have the potential to aid people avert developed onset disorders and consequential morbidity and mortality.

More than 180,000 new cases of breast cancer are diagnosed annually of which approximately five–10% will have an inherited susceptibility to the disease [10]. As part of new patient multidisciplinary consultation, a nurse case manager took a cursory family pedigree of a adult female to identify any information consequent with an inherited susceptibility to cancer. The nurse identified a paternal family unit history of early onset breast cancer and her ethnic heritage, Ashkenazi Jewish, both of which influenced her take chances of having a mutation (change in a factor) in a chest cancer susceptibility factor. The nurse referred this woman to a cancer genetic specialist. The woman chosen the nurse example manager to tell her that she was tested for mutations in BRCA1 and BRCA2 and was constitute to have one of the mutual Ashkenazi Jewish founder mutations. She proceeded to have her ovaries removed to reduce her risk of ovarian cancer and learned that the pathology showed pre-cancerous cells. Did this genetically competent nurse save this woman from a future diagnosis of ovarian cancer? Almost certainly, the respond is yes. The evidence points to not only a reduction in morbidity and potential mortality past substantially reducing her adventure of ovarian cancer, but likewise to a wellness care savings of hundreds of dollars per life year [xi] every bit a consequence of the nurse'south actions.

Annually, approximately 180,000 to 250,000 individuals in the United States volition endure a sudden cardiac death [12]. Nurses knowledgeable in genetics/genomics tin can help people avoid sudden cardiac death. A cardiovascular avant-garde practice nurse (APN) performed a cardiac echocardiogram on a patient who told the story well-nigh several family members who had died of a sudden from a heart assault. Intrigued, the APN obtained a family unit history and shared it with one of the cardiologists. Over several years, the APN collected an extensive multiple generation family unit history that included members located in many states and several countries and found that many had died in their teens and early adult years. The family participated in a inquiry study and eventually the gene and disease specific mutation were identified [13]. A woman from the family described the benefits of undergoing genetic testing equally a invitee speaker at a genetic nursing conference. When the adult female discovered that she did accept the family cistron mutation associated with sudden cardiac expiry she scheduled her first appointment with a cardiologist. Over an 8 year menstruum, she had an implantable cardioverter defibrillator (ICD) placed which cardioverted her on two separate occasions and then she had ii ablation surgeries for atrial fibrillation (irregular center beats which can be life-threatening). At the conference, she was pregnant with her first child. She explained that her pregnancy was possible because of the APN'southward genetic knowledge and shut monitoring, education of other health care professionals involved in the woman's prenatal care, and her guidance and support throughout the pregnancy. In this family, the APN had averted the premature decease of many at gamble family members by listening to and further investigating a family history over ten years.

• In preconception and prenatal settings, nurses have an opportunity to assist families prepare for a child with a genetic status.

Congenital malformations are the leading crusade of infant death in the U.s.a. [fourteen]. Recently, a 48 twelvemonth onetime adult female recalled her experiences with the birth and eventual expiry of her two children with different chromosome disorders. She contrasted her tumultuous feel with her commencement baby to her dramatically amend feel x years later with her second babe. When the woman was 30 years erstwhile she received a call at work from the obstetrician'due south office that her genetic screen was aberrant. A follow up amniocentesis revealed that her developing baby had trisomy 18 (Edwards syndrome). Suffering from years of emotional guilt after terminating a pregnancy when she was young, the woman elected to proceed her pregnancy. When her daughter was born, the mother felt very footling support from the nurses and physicians. She described them as chore oriented and very clinical. When she was discharged dwelling with her baby the mother felt abandoned past the health care system; her only contact with wellness intendance professionals being her baby's pediatrician, who had never cared for a child with trisomy 18 during his xx years of practice. Ten years later, the woman became significant with her "miracle child." Considering of her age and history of having a previous child with a chromosome disorder, the woman elected to have an amniocentesis for reassurance. Unfortunately, the results revealed she was pregnant with a male person fetus who had trisomy 13 (Patau syndrome). In contrast to her previous experience, she was referred to a pediatric hospice service. The woman was reassured past the nurses' and physicians' knowledge about trisomy 13 and the expected clinical class. The nurse made sure all labor and delivery and postnatal staff were knowledgeable about trisomy 13 and aware of the expected birth as well as the plan for condolement care. The nurse maintained contact with the adult female during the pregnancy and provided hospice care during the woman's son's 12 calendar week lifespan.

Context and Solutions

Research

• The goal of nursing inquiry in clinical genetics and genomics is to amend the quality of health care for patients and families.

Context

Nursing research can provide a foundation of content for maintaining wellness through prevention and health promotion. The paucity of issue data is hindering efforts to contain genetics/genomics into curricula, licensure, certification, and academic and wellness care arrangement accreditation. Nursing research that investigates the behavioral, social, and physiological benefits and risks for individuals and families is needed to verify the value of this new science to patient and family intendance. In that location is an urgent need for nursing research that provides evidence for genetic/genomic exercise guidelines and to document outcomes of genetic/genomic based nursing care. For example, there is a lack of nursing research to provide important insights almost how nurse' cognition in genetics/genomics can optimize patient outcomes. There is also an urgent need to connect the patients and families who need these research discoveries with the potential benefits of increasingly bachelor options for care. For example, more than research is needed to explore how family members admission, use, and cope with genetic/genomic information that can influence the achievement of present and future wellness goals.

Solutions

Nursing enquiry examines questions from a biobehavioral perspective that links clinical and bones science, as well equally genetic and genomic inquiry [xv]. Increased funding is needed for nurse researchers to conduct basic, clinical and translational genetic/genomic research. In add-on, connected support is needed for pre and postdoctoral fellowships, the National Plant of Nursing Research Summer Genetics Plant, and other innovative programs. Public and private funds to back up these key components for grooming of tomorrow's nurse genetic/genomic researchers are required to achieve genetic/genomically literate researchers who volition carry innovative genetic and genomic research and obtain valuable scientific data.

Instruction

• Education is required for nurses and all wellness professionals to clinch that the revolutionary advances in genetics and genomics reach the patients and families for whom they were developed

• Nurses, other wellness care professionals and their employers will ultimately face up significant liability for failing to contain genetic/genomic discoveries into practice.

Context

The integration of genetics and genomics information into all facets of health care provides the tools to treat patients as truly unique individuals and implement novel screening, diagnostic, and therapeutic interventions all aimed at improving population health. The gap between genetics/genomics in clinical care, and what the nursing community is equipped to provide, grows larger twenty-four hours by day. A similar gap exists for medicine and other health professionals [16]. Understanding the implications of genetic/genomic changes associated with common diseases has the potential to amend the identification of individuals at risk for health problems, target take chances reducing interventions, raise existing screening, improve prognostic and treatment choices, develop individualized therapy, and influence treatment dosing and choice based on genetic variations that influence drug response. With the increasing development of exercise guidelines, commercially available tests, insurance coverage, and legislative protection, genetic tests are already moving across specialty genetic services into the mainstream health care arena. The issue is health care providers including nurses, not especially trained in genetic or genomics including implications of genetic testing, are assuming responsibility for all aspects of genetic/genomic service commitment. Further challenging the health intendance customs is the fact that straight to consumer marketing of some genetic tests are already underway [17]. These discoveries have the potential to subtract the affliction burden and morbidity, and present a unique opportunity to touch wellness intendance costs. However, this benefit will be limited past the lack of knowledgeable professionals who can help the public understand the risks, benefits, or value of such genetic tests.

Prove continues to accumulate regarding the value of genetic/genomic information on health outcomes [18, 19]. A significant barrier to assuring that patients and families benefit from this rapidly emerging knowledge is lack of recognition of the value of genetic/genomics on wellness outcomes across the health professions. There is a tremendous gap in the knowledge of practicing nurse almost the relevancy of genetics/genomics to clinical care. Furthermore, there is an even greater knowledge gap associated with the sensitivity, specificity and clinical utility of the broad array of genetic tests available to the public. This gap tin be closed through instruction nearly the relevancy of these discoveries and the translation to practice, education, and policy. In addition to balancing the indicate, information technology can serve every bit another manner nurses can contribute to better decision-making for patients).

Current academic nursing teaching does non adequately set nurses for their evolving part in today's genomic era. Genetics/genomics didactic and clinical content are non standard in Registered Nurse (RN) preparatory programs, leaving a large nursing workforce insufficiently prepared to aid people have advantage of genomic discoveries to improve their health. Previous inquiry has revealed that many nurses accept minimal training in genetics and genomics [20]. Recognized past nurse educators and professional nursing organizations as a trouble, the American Association of Colleges of Nursing (AACN) revised The Essentials of Baccalaureate Education for Professional person Nursing Practice, which now integrates genetic/genomic concepts as foundational for all baccalaureate nursing curriculum [21]. Some professional nursing organizations include genetics/genomics in annual education programs, and 49 professional organizations endorsed the U.Southward. genetic/genomic nursing competencies.

Although the preparation of nurses for today's genomic era is recognized by the bookish community, kinesthesia resource are meager and funds for educational programs to comprise genetic/genomic into curricula are lacking. Public and private funds are needed to assure that all nursing faculty are able to acquire the cognition necessary to initiate and sustain the integration of genetic/genomic content throughout all nursing programs.

Solutions

Efforts in transforming wellness intendance should focus on educating nurses to be competent in this new knowledge. Reaching the 2.9 million practicing nurses requires fiscal support to develop and update continuing education programs; to create workshops; and build, maintain, and update an educational portal that facilitates access and use of all available genetic/genomic educational resources. United States genetics/genomics nursing leaders take helped prepare the nursing profession by developing and disseminating guidelines for genetic/genomic exercise (Genetics/Genomics Nursing: Telescopic and Standards of Exercise) and education (Essential Nursing Competencies and Curricula Guidelines for Genetics and Genomics). Nurses in several countries are devising solutions to comprise genetic/genomic teaching into standing education programs for clinicians and into traditional academic programs. The Competencies provide guidance to educators about required noesis, skills, and abilities of nurses to assure quality care in the 21^st century [22, 23]. Information technology is a tremendous challenge to address the learning needs of current kinesthesia who themselves take not had this new scientific discipline in their grooming. Efforts to provide the tools to facilitate didactics of faculty are ongoing (see Tabular array 1) with: one) publications to promote awareness; 2) development of educational programs to prepare faculty and researchers; and three) tools to assist faculty in curriculum integration of genetics and genomics. The leadership nursing has provided in the area of competencies and education tin can serve as models to inform the work of other health care professionals. Four major areas need progress.

Table 1

Leadership in Genetic/Genomic Nursing Education^*

• Relevant genetics/genomics content is needed across nursing continuing education programs to clinch quality care.

• Nursing pedagogy programs must emphasize the genetic/genomic concepts and skills needed to assure quality care.

• Genetic/genomic cognition and skills need to be integrated into pupil clinical experiences across the life span and throughout the health and illness spectrum.

• Resources to prepare faculty and to support ongoing changes are needed to assure that all faculty are able to implement and sustain the integration of genetic/genomic content throughout all nursing programs.

Disparities/Insurance/Reimbursement

• The nursing profession has a key role in assuring that genetic/genomic health care does not heighten racial and indigenous health inequities.

Context

Race and ethnicity are currently potential indicators for those at take a chance for or protected from a disease, as well as for unlike treatment responses [24]. Yet, reliance on these proxies should diminish every bit applied science improves our power to identify and interpret an private's combination of genetic variations associated with particular wellness outcomes [25, 26]. This will require appropriate use of new scientific knowledge, merely also a continued emphasis on caring for each patient as an private [27]. Interpretation of genetic information in a sensitive and appropriate fashion requires accurate sensation of all the influencing factors affecting health intendance outcomes including genetics/genomics—only likewise includes the socioeconomic, lifestyle, and environmental influences that impact affliction occurrence and treatment decisions. Nurses tin help policy makers to understand differences between labels that take societal implications versus private characteristics that may increment risk for disease, bear on the management of diseases and illness prevention or adverse drug reactions in order to provide individualized and safe health care.

Solutions

• Nursing educational activity programs and curricula must increase accent on the cultural, language, family values, traditions, wellness beliefs and religious perspectives that impact admission to and use of genetic/genomic information, applied science and services.

• Effective continuing didactics programs volition set practicing nurses to consider influencing variables related to the use of genetic/genomic services.

• Cultural assessment, knowledge, and skills must be integrated into nursing curricula and clinical experiences.

• Funding will support genetic/genomic research that investigates the influence of human genetic/genomic variation on health care outcomes.

• Application of nursing research on health disparities to inquiry on genetic and genomics and health outcomes for patients and their families.

Policy

• Nursing contributions improve patient and family health outcomes and strengthen the practice of all health intendance professionals.

• Nurses have engaged in informing policy of genetics and genomics for decades by serving on committees to develop and plant policies, standards and practices that clinch the highest possible levels of health care for all Americans.

• Policies that promote inclusion of genetics and genomics equally an essential component of nursing education and delivery of wellness care, regardless of setting, are essential to advance the piece of work of translation and application of genetic and genomic advances for promoting and protecting the health of the public.

• Current genetic and genomic [0]issues are [0]all of concern to nurses as they bring a biobehavioral perspective to the table with an emphasis on prevention and health promotion in the context of the patient, family and community. This central perspective provided by nurses is crucial when these are being debated.

Context

Genetic testing is at the forefront of genomic health intendance applications with availability of testing for over 1,600 genetic disorders ranging from single gene disorders, such as cystic fibrosis, to complex disorders, such as diabetes. Family history is a valuable tool to identify those who may benefit from genetic services including genetic counseling and testing. The importance of obtaining an accurate family unit history as the critical entry betoken for those with genetic risks for disease, disability, or adverse drug effects cannot exist overemphasized.

Currently, limitations of genetic testing generally include analytic validity, clinical validity, and clinical utility—all of which influence the accuracy and usefulness of the genetic test. Specifically, one business related to genetic testing and its limitations is encompassed by a concept known equally genetic determinism. Genetic determinism is the thought that an individual who undergoes a genetic exam and is shown to exist 'at adventure' for a genetic disorder will ultimately be diagnosed with the disorder. While this may exist true for disorders such as Huntington affliction and early onset Alzheimer disease, most predisposition genetic tests are not sensitive or specific enough to allow prediction with certainty that the disorder will occur. Furthermore, when the family disease associated mutation is not known, testing negative on a genetic test does not rule out a disorder occurring in the future. These are circuitous concepts that may be hard for the lay public to understand. Nurses regularly provide patient and family teaching and have the understanding and skills to anticipate and meet the educational needs of clients.

Electric current genetic/genomic policy issues existence debated by policymaking groups can benefit from the biobehavioral patient/family/community centered perspective of nursing. A fractional list of current challenges to condom, quality care for the U.S. public includes:

• Personalized health care: What models will emerge? Volition there be access for all individuals regardless of demographics? Specifically, will genetic and genomic tests be available to all or to only a select few?

• Racial/ethnic disparities: Will genetic/genomic information diminish or increase disparities?

• Economical cost/value: What is the cost and value to individuals, families, and guild of genetic/genomic applications—specifically genetic testing, genetic/genomically sensitive supportive care, and pharmacogenomics [28]?

• Direct to consumer marketing of genetic tests: What is the appropriate oversight? How to clinch acceptable consumer didactics pre- and post-genetic test results? Are the genetic exam results sensitive, specific, and quality controlled?

• Wellness and related genetic/genomic information: How will data exist stored, shared, and kept private? New models are emerging and usefulness and benefits are yet to exist addressed. How will electronic medical records touch documentation privacy and confidentiality?

• Potential bigotry: The Genetic Information Nondiscrimination Act (GINA) H. R. 493 has been passed by Congress. Nevertheless, there are significant gaps including one) it excludes military personnel; 2) it does not utilize to life, disability or long term care insurance; and 3) information technology does not prohibit medical underwriting based on current health condition [29]. Other issues not addressed in this legislation may also emerge.

• Back up for interdisciplinary health care education as a model that promotes effective use of genomic information integrated across disciplines [30, 31].

• Provider reimbursement for genetic/genomic services: This complex consequence involves nurses, other health care providers, as well as the consumer.

• Funding to back up the incorporation of genetics/genomics into:

  • – Nursing educational activity at all levels.

  • – Inquiry and enquiry training, specifically through funding of the National Institutes of Health programs. Examples include: National Establish of Nursing Inquiry Summer Genetic Institute, National Human Genome Inquiry Establish (NHGRI) programs (including Upstanding, Legal, and Social Implications), institutional preparation grants (T32) in genomics, and individual funding.

Solutions

Nurses have fabricated important contributions as members of old President Clinton's Secretary'southward Informational Committee on Genetic Testing (SACGT) and President Bush-league's Secretary's Informational Committee on Genetics, Health, and Society (SACGHS)—and individually and as representatives of organizations, presented testimony on topics ranging from genetic/genomic pedagogy of health care professionals to rights for protection from genetic discrimination.

The Evaluation of Genomic Applications in Exercise and Prevention (EGAPP) initiative, sponsored by the Centers for Disease Command and Prevention (CDC), was implemented in 2004. The EGAPP initiative includes a working grouping with the main goal of writing and informing others of recommendation statements for employ of genetic tests. A nurse serves on the EGAPP Working Group. Building from her contributions ii nurses were appointed to the Evaluation of Genomic Applications in Exercise and Prevention Stakeholder group (ESG) for EGAPP. Nurses are agile participants in EGAPP initiatives since their inception and every bit a result have been able to disseminate the genetic/genomic recommendations to the nursing customs also as provide feedback to the working group.

However, these efforts alone are not sufficient to address the multiple strategies that are needed to fully engage nurses. The post-obit are examples of nursing's contributions to genetics/genomics. If nosotros are to truly leverage nursing's part in improving the outcomes of care, more of these initiatives and efforts must include nursing:

The Establish of Medicine has instituted a Roundtable on Translating Genomic-Based Inquiry for Wellness with the overarching mission to advance the field of genomics and improve the translation of research findings to wellness care, educational activity, and policy. This multi-disciplinary effort, which includes nursing, has identified six priority areas: evidentiary issues and method; systems for research and evaluation; service delivery; innovation; educational activity and; coordination. A nursing leader chairs the Education Committee.

The International Council of Nurses (ICN) is a federation of national nurses' associations from more than 128 countries. The ICN represents the world'due south widest reaching international arrangement for health professionals. In 2004, the ICN published the Genetics in Nursing Monograph providing a vision for nursing nationally and internationally in global, scientific, practise, didactics, social, information, upstanding, and political contexts.

Genetic/genomic data is condign widely available through enquiry and testing. There is a movement toward widespread sharing of vast amounts of genetic/genomic data in an effort to research, prevent, and treat common disorders of adulthood, such as diabetes, cardiovascular disease, and Alzheimer Disease. Concerns exist regarding the power to match individuals to their genetic/genomic data fifty-fifty when traditional identifiers (i.e., proper name, social security numbers) are removed. Nurses are well positioned to guide policies on the emerging problems related to use of genetic/genomic data as they accept experience in monitoring enquiry protocols through participation on Institutional Review Boards (IRB) and other groups who monitor these bug.

Research findings about the advisable use and interpretation of genetic and genomic data and technologies are needed, and these would provide the foundation for our policymaking bodies [32]. Yet, the desire to create a 'one size fits all' policy has been a challenge when developing wellness policies for an extremely diverse population such as that in the United States [31]. Nurses are conducting research ranging from upstanding bug of genetic testing to conducting microarrays on tissue samples. Findings from these studies and others have provided a foundation for ethical and social policies.

Professional organizations and foundations such every bit the Robert Wood Johnson Foundation (RWJF) provide advanced leadership fellowships for nurses who are aspiring to pb and shape the U.Southward. health care arrangement of the future. The American Academy of Nursing (AAN) supports the RWJF'southward "Nurse Leaders in the Boardroom" effort, which seeks to identify nurse leaders on not turn a profit health care boards, by identifying candidates and mentors, and assessing primal national health policy/decision-making bodies to identify those that have no or insufficient nursing representation, including those who represent genetics/genomics interests.

International Perspectives

• Preparing nurses to provide genetic/genomic-based wellness care is an international concern and by working together, nurses are finding answers.

• Policies that enable genetic/genomics to exist an essential component of nursing education and commitment of health care regardless of setting are essential to accelerated translation and awarding of genetic/genomic advances to the health of the public.

• Nursing is recognized equally providing leadership in educational programs nationally and internationally these programs tin serve as models for all health professionals.

The need for a genetically literate workforce that can lead and assure nursing's ongoing participation in translation of genomic discoveries into day-to-mean solar day health care is not limited to the United States. Although the chore of achieving genetic literacy for the over ii.9 meg U.S. nurses projected to be needed by 2020 [33] is one of the largest challenges faced by the profession; U.South. nurses are not alone in devising ways to meet this challenge.

Globally, nursing leaders look to each other for guidance to develop new strategies and nurses learn from colleagues who are implementing national education programs [30]. In 2001, the Usa developed the National Coalition for Health Professional Education in Genetics (NCHPEG) competence statements. These were the template for United Kingdom (U.Yard.) nursing competencies [34]. The U.K. nursing program in the National Health Service National Genetics Education and Evolution Heart uses the U.1000. nursing genetics competencies to enhance awareness of the relevance of genetics, piece of work collaboratively with policy stakeholders, and to provide practical help to integrate genetics and genomics into curricula and courses [35]. The 2003 U.K. White newspaper, Our Inheritance, Our Future [34], has had a substantial impact on nursing practice and genomic health intendance in the U.Thousand. with an increase in trainee posts and education for nurses and other clinical practitioners. The goal of the National Health Service, to brand the all-time apply of advances in genetic/genomic knowledge, has resulted in increased investment in genetic services, research, and development of capacity across the unabridged health care system. This increased investment helps to harness the potential and involve the public in standing debate regarding genetic developments and wellness care [34]. Similar efforts to develop the capacity of nurses to participate in genetic/genomically competent wellness care are ongoing in Japan where developments in genetic nursing have recently occurred [36, 37].

Concurrent analysis of nursing didactics's efforts by U.S., U.K., Southward African, and New Zealand members of the International Guild of Nurses in Genetics (ISONG) facilitated collaboration among countries in identifying the nearly pressing obstacles to development of genetic/genomic health care [38]. Genetic/genomic nurse leaders from the United states of america, the United kingdom of great britain and northern ireland, Brazil, Japan, Taiwan, Ireland, and Australia recently identified lack of effective presentation of genetics/genomics in nursing curricula and obstacles within health care settings equally major barriers to integration of genetics and genomics into all aspects of nursing exercise [39]. The lack of a genetically informed nursing workforce forth with health care systems that are not prepared to implement genetic/genomic information into holistic care delivery are major obstacles to transforming wellness care. These are obstacles for the U.Due south. public that limit their opportunities to receive accurate and timely identification of genomic contributions to their hazard for disease, direction of symptoms, and support to individuals and families.

United States nurses have accomplished important milestones by creating do guidelines and competencies with back up from professional organizations including ISONG and the American Nurses Association [xl, 41]. These efforts advanced through federally funded projects that support nurse training, development of teaching resources, and research to build knowledge of genomic health care. Withal, the resources have not kept upwardly with the demand, and electric current resources are non sufficient to sustain even these initial training efforts. Education resources to prepare kinesthesia, students, and practicing nurses are needed. Resources are besides necessary to fund basic, clinical, and translational research to build the testify base that will guide practice for today's and tomorrow's nurses. The scope of these guidelines will proceed to augment, as genetic/genomic discoveries become disquisitional components of health promotion and illness prevention assessment and treatment management options for a larger spectrum of wellness concerns.

Summary of Current and Hereafter Policy Issues

• Nurses and representatives of professional nursing organizations bring a biobehavioral perspective to the table with an emphasis on prevention and health promotion in the context of the patient, family and community. Nurses are integral to the policymaking process that affects wellness care practice in the expanse of genetics/genomics.

Bringing the entire U.S. nursing workforce (over two.9 million) to the forefront of genetics/genomic wellness care practice is appropriate, as ane role of the nurse is to elicit wellness related information, recognize what is important, and subsequently act upon that information. Public policies that touch heath intendance practice in the area of genetics/genomics will be stronger with inclusion of nurses and professional nursing organization representation in the policy making process. Successful application of genetic/genomic discoveries to transform health care requires:

• an infrastructure for assuring quality oversight of genetic/genomic testing laboratories

• a plan to more quickly integrate new genetic/genomic applications into do for effective clinical application

• a prepared workforce that recognizes the risks, benefits and limitations of genetic/genomic data

• an infrastructure that provides resource to kinesthesia who set this workforce, and

• policies that support integration of genetic/genomic information and services into wellness care.

Based upon the growing trunk of increasingly rigorous inquiry, there is strong bear witness that genetics/genomics is having both a national and global impact on health care. Nursing, as the largest and most trusted health care profession in the United states of america recommends the following to transform health care utilizing genetics and genomics:

• systematic inclusion of genetic and genomic information in all nursing instruction

• funding to train and back up nursing kinesthesia to integrate genetics and genomics into nursing instruction.

• funding to implement continuing education programs in genetics and genomics for nurses and other health care providers in lodge that they may maintain and expand a health care provider genetic/genomic noesis base.

• evidence of genetic/genomic competency for every health care provider as a requirement for health care institutional accreditation by organizations such every bit Joint Commission

• documentation of genetic/genomic continuing education at the time of license renewal

• reimbursement for nurses and other healthcare providers from third party payers for assessments that include a genetic/genomic family history

• funding to plant a nursing enquiry priority plan based on a systematic evaluation of the current state of the science in guild to stimulate research that increases the knowledge base of operations for genetic/genomic nursing through advancing cutting-edge, critical priority areas of research, and priority populations for study; and which serves as a model for other wellness disciplines

• increased funding to comport nursing research in genetics and genomics

• policies that require genetics/genomics to be an essential component of nursing education and delivery of health care, regardless of setting, are essential to advance the work of translation and awarding of genetic/genomic advances for promoting and protecting the health of the public, and

• active participation by nurses when genetic/genomic [0]policy issues are being debated.

Footnotes

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Source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2835985/

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