The outcomes of genetic research endeavors have the potential to transform health care with significant implications for both providers and consumers of clinical services. Professional and public integration of genetics knowledge is key to successful utilization of genetics information. This article will provide an overview of genetics including a historical perspective, examples of genetic health care, the nursing perspective, and ethical considerations and challenges. New scientific explanations for health, disease, responsiveness to treatment, and design of options for care may create personal and professional dilemmas. Nurses have a responsibility to become active participants in confronting the demands resulting from this new knowledge for education, practice, and policy. The purpose of this article is to provide a foundation from which the profession of nursing can build to enhance current skills and knowledge about genetics to prepare for this transformation in health care.
Key Words: genetics, Human Genome Project nurses, education, ethics
The history of biology was altered a decade ago when significant research funding support was made available for the study of the human genome as part of the Human Genome Project (HGP) (Collins, 1999). This genome, made up of approximately 80,000-100,000 genes, contains the basic DNA information that
The history of biology was altered a decade ago when significant research funding support was made available for the study of the human genome as part of the Human Genome Project
directs the structure and function of the human body. The branch of biology that deals with genes is called genetics. As the result of dramatic advances from the HGP and other similar basic genetics research projects, the molecular essence of the human is about to be known. The outcomes of these endeavors have the potential to transform health care with significant implications for both providers and consumers of clinical services (Hayflick & Eiff, 1998). The purpose of this article is to provide a foundation from which the profession of nursing can build to enhance current skills and knowledge about genetics to prepare for this transformation in health care. This article will provide an overview of genetics including a historical perspective, examples of genetic health care, the nursing perspective, and ethical considerations and challenges.
Historical Review of Genetics
Through the ages, much speculation has occurred about heredity or how physical and functional characteristics were passed down through families. Philosophers and scientists conjured up theories of how transmission of traits to offspring occurred. Developments in technology and research capabilities have lead to accelerated progress of the understanding of the science of genetics. This progress is now enhancing the application of genetics in health care.
Early theories about how traits were carried (by the blood), contained (in the ovaries), or transmitted through families (skills absorbed over time passed onto children) were found to be inaccurate as microscopes and other tools were invented. The 18th century brought even greater examples of the role of selective
Traits that are passed on following the principles of inheritance described by Mendel are known as single-gene or Mendelian disorders
reproduction in improved agricultural products which initiated a whole scientific field focused on heritable characteristics (Lander & Weinberg, 2000). In 1865, Gregor Mendel wrote a paper that described discrete hereditary elements in the sex cells as responsible for the transmission of traits. This work laid the foundation for modern genetics, although this was not realized until the late 1900s (Mendel,1865/1966). Traits that are passed on following the principles of inheritance described by Mendel are known as single-gene or Mendelian disorders (Thompson, Mclnnes, & Willard, 1991). More than 10,000 pieces of information about single-gene disorders has been identified and catalogued on the Internet in Victor A. McKusick's Mendelian Inheritance in Man site [www.ncbi.nlm.nih.gov/Omim].
Throughout the 1900s, discoveries further identified the location of hereditary instructions in the genes found in chromosomes, recognized the role of genes in the production of enzymes, and elucidated the connection between a specific gene and its product (Muller, 1951). The molecular structure of DNA (deoxyribonulcleic acid) was determined by James Watson and Francis Crick (1953). The structure of DNA or the double helix makes gene transmission possible through the ability to make exact copies of itself. These strands of DNA are packaged in chromosomes in the cell's nucleus and occur in pairs. DNA contains four purine-pyrimidine bases, adenine (A), guanine (G), cytosine (C), and thymine (T). A genetic code, made up of a series of three nucleotides (A, T,C, or G) guides the assembly of proteins. This precise genetic code is read out within the human body and specifies the organisms shape and function. RNA (ribonucleic acid), which contains uracil instead of thymine, carries this code to protein-making sites in the cell. Any error in the code affects protein synthesis. Such an error or mutation may be insignificant, may lead to disease, or may be lethal (Lewin, 2000). DNA technologies have been extraordinarily successful in unraveling the genetic code of multiple organisms including the fruit fly, E. coli, yeast, and now humans. The intricacies of the genetic code hold the key to improved understanding of human genetic disorders in the 21st century as a result of enhanced research methodology and funding.
Modern Day Genetics
The Human Genome Project (HGP) was funded by Congress in 1988. The HGP is the result of a collaborative, coordinated research effort in human genetics co-planned by the Department of Energy (DOE) and the National Institutes of Health (NIH). These agencies developed a memorandum of understanding in 1988 that outlined working relationships and a 5-year plan. James Watson was designated as head of the program at NIH, and the National Center for Human Genome Research was established in Bethesda, Maryland. The HGP has been instrumental in fostering a multidisciplinary group approach to research with an expectation of openness and sharing of discoveries via informatics technology. All goals formulated for 1993-1998 were achieved and new goals were presented in 1998 by the current
The HGP has been instrumental in fostering a multidisciplinary group approach to research with an expectation of openness and sharing of discoveries via informatics technology.
director of the National Human Genome Research Institute, Dr. Francis Collins (Collins et al., 1998). It was further projected that achievement of the goal of completing 90% of the DNA sequence of the human genome would occur ahead of schedule and indeed, a draft was made available in 2000 (Collins, 1999; Marshall, 2000). The achievement of knowing the full human genome sequence is predicted to be a significant scientific historic event. Continuing goals of the HGP for the next five years include completion of the total genome sequence, a catalogue of variation in the human DNA sequence, faster/cheaper technology, a focus on gene function, and continued attention to the implications of such knowledge for society. Ethical, legal, and social implications of genome research goals have been expanded to include attention to the integration of genetic discoveries into the clinical, nonclinical, and research settings. Professional and public integration of genetics knowledge is key to successful utilization of genetics information. Both political and public sectors must become engaged and knowledgeable about the implications of this very personal information to society. The focus on interaction of genetic information with philosophical, theological, and ethical perspectives is an essential component of the HGP. And finally, examining the impact of socioeconomic factors, race, and ethnicity on the understanding and use of genetic information is an additional component of the HGP (Collins et. al., 1998). Additional information regarding the goals of the HGP is found at [www.nhgri.nih.gov].
Genetics and Medicine
Progress made as a result of the HGP and similar genetics research in the public sector has accelerated the potential for improved understanding of the implications of the genetic code in the prediction, diagnosis, and treatment of illness. Most health conditions are believed to be the result of a combination of genetic and environmental influences and interactions. Services, resources, and education in genetics have evolved into a genetics medical specialty in response to the need for the integration of genetic information into care. However, there is the prediction that primary care providers and other health professionals, regardless of specialty, will ultimately need to integrate new genetics knowledge into routine practice (Hayflick & Eiff, 1998; Collins, 1997).
Genetic Health Care
The potential for genetic analysis has progressed most rapidly with the rarer, single-gene disorders. However, recent discoveries and technological advances make it possible to test for the presence of a genetic component that contributes to the predisposition of many common illnesses such as cancer, heart disease, and mental disorders. Two meetings, Banbury Conferences on Genetics and Primary Care, were held to provide a forum for discussion about the implications of this "new" genetics for health care. The first meeting in 1994 reviewed the current status of genetics in primary health care; and the second held in 1995 addressed how to incorporate genetics and genetic education into medical and nursing practice. These meeting summaries provide a baseline understanding of the strengths and limitations of knowledge among health professionals with recommendations of mechanisms for meeting the anticipated demand for genetic services (Touchette, Holtzman, Davis, & Feetham, 1997).
Traditionally, genetic services were provided primarily in academic medical settings by specially trained health professionals (Andrews, Fullarton, Holtzman, & Motulsk, 1994). A greater capability for prenatal diagnosis of genetic diseases brought families to pediatric, obstetric, prenatal diagnostic, and community health settings for case finding and counseling (Forsman, 1994). The need for genetic counselors developed in the 1970s when the types of services offered included assessment, education, counseling, testing, and interpreting of complicated genetic test results. Nurses as part of this genetics team also provided care in regional genetics networks, private office settings, and specialty genetics clinics. Much discussion and exploration has occurred about the role that nurses would be able to assume in both current and future provision of genetic services (ISONG & ANA, 1998; Lea, Williams, Jenkins, Jones, & Calzone, 2000).
According to McKusick (1992) during the last 25 years (1956-1991) human genetics has become "medicalized, subspecialized, professionalized, molecularized, consumerized, and commercialized" (p. 667). Soon it will become publicized as that common thread of knowledge that all health professionals must include among their skills when offering health care services. A survey identified three barriers that will limit the ability of health professionals to incorporate genetics into primary care: knowledge, financial, and time constraints (Touchette et. al., 1997). As more genetic tests and gene-based therapies become available, there will be too few professionals with advanced training in genetics (i.e. medical geneticists and genetic counselors) to meet the predicted demand for genetic services. This gap will result in the need for other health professionals to identify alternative strategies for integrating genetics into education and practice.
The pace of genetic knowledge is progressing expeditiously. The private sector is increasingly interested in building their markets upon the information available from the HGP and offering commercialization of genetic diagnostics and services (Caulfield, 1998). Molecular medicine and information-based targeted health care is attracting entrepreneurial companies to consider the role of proactive prediction and prevention of disease risk based on an individualized genetic profile (Poste, 1998). The capability to offer such targeted services requires that nurses be able to communicate risk information, interpret genetic tests, and explain variations in treatment design based on genetic differences (Prows & Prows, 1998; Rimer & van Nevel. l999).
The Nursing Perspective
Translating genetic information into practical information for both professionals and consumers requires that nurses become familiar with new terminology, concepts, and technologies. New scientific explanations for health, disease, responsiveness to treatment, and design of options for care may create personal and professional dilemmas. Progress to date is providing a foundation from which the profession of nursing can build to enhance current skills and knowledge to offer quality care of the future.
The rapidly changing health care environment creates uncertainty and role ambiguity which influences the confidence and competence of nurses in providing quality patient care. Perhaps this ambiguity has been a factor in the delay of nurses recognizing genetics as an integral part of every nursing program and assuming a proactive role in the clinical application of genetics (Lashley, 1997). The need for genetics to be an integral part of the nursing curriculum has been expressed since the 1960s (Brantl & Esslinger, 1962). Through the efforts of professional groups and passionate individuals, the profession of nursing is beginning to address the existing gaps that limit our participation in the genetics revolution.
Implications for Professional Societies
Professional nursing societies assume responsibility for offering educational programs that enhance the knowledge and capabilities of their membership
Recognizing that genetics is a topic of critical importance, professional nursing organizations have begun to realize that they hold the key to preparation of nurses in genetics.
to assimilate new responsibilities. Recognizing that genetics is a topic of critical importance, professional nursing organizations have begun to realize that they hold the key to preparation of nurses in genetics. Twenty-four representatives of specialty organizations attended a 1995 meeting at the NIH. All attending expressed interest in genetics information for their membership, but recognized their need to rely on those nurses with genetics expertise for leadership and development. The organization recognized as the leader in understanding genetics knowledge and skills that are required by nurses is the International Society of Nurses in Genetics (ISONG). A strong commitment from these leaders in nursing will be necessary so that collaboration with members of ISONG can be effective in dissemination of this important content for all of nursing.
International Society of Nurses in Genetics (ISONG)
ISONG is an organization of genetics specialty nurses that was founded in 1981 and incorporated in 1988 (Williams, 1997). ISONG is dedicated to the scientific, professional, and personal development of nurses in the management of genetic information [http://nursing.creighton.edu/isong]. Through annual meetings, newsletter communications, and credentialing efforts, ISONG strives to assure that nurses in practice around the world are adequately prepared to deliver genetic services. Individual ISONG members have developed curriculum frameworks (Jenkins, 1999) and faculty educational resources [www.fbr.org and look under curricula]. ISONG members also work collaboratively with other health professionals to influence national efforts that promote genetics education. One such initiative is in collaboration with the National Coalition for Health Professional Education in Genetics.
National Coalition for Health Professional Education in Genetics (NCHPEG)
NCHPEG is a coalition of more than 100 professional organizations joined together to promote professional education about advances in genetics. Initiated in 1996 by the American Nurses Association (ANA), the American Medical Association, and the National Human Genome Research Institute, NCHPEG identified goals of the coalition. An initial goal to develop recommendations for core competencies in genetics essential for all health professionals was identified as important to the membership. An ISONG representative chaired the Working Group, which capitalized on collective expertise and cross-disciplinary collaboration to achieve this initial goal. Other goals identified by membership as important are:
- to influence integration of genetics into certification and licensing exams;
- to develop useful and accessible web information; and
- to develop potential clinical tools such as a family history collection tool to influence the availability of useful genetic resources.
Each of these goals requires extensive work and collaboration among the diverse NCHPEG disciplines and has the potential to influence education of all health professionals about genetics. The goals are described at the NCHPEG website.
Implications for Education
Historically, the profession of nursing has been slow to recognize the need to make curriculum changes or offer continuing educational programs related to genetics. Scanlon and Fibison (1995) reported in their summary of a national survey on 1000 nurses the limitations of training, knowledge, and experience of nurses related to management of genetic information. Only 15% reported that genetics courses had been offered as part of their basic education. Nurses did not feel prepared to meet the potential ethical dilemmas resulting from utilization of genetics information in practice. Findings suggested a need to strengthen fundamental courses and genetic experiences in the clinical training of nurses and the establishment of continuing education programs on genetics at local and national settings.
Although academia focuses on meeting the needs of tomorrow's nurses, the nursing literature continues to document the lack of genetics content as part of basic nursing education programs (Anderson, 1996). Two surveys of basic nursing preparatory programs indicated that the mean number of hours in curriculum devoted to genetic conditions was 6.9 hours in 1980 and 6.2 hours in 1996 (Monsen, 1984; Hetteberg, Prows, Deets, Monsen. & Kenner, 1999). Both surveys reported that respondents felt that genetics content was not included in the curricula because of time constraints. Some faculty have explained to this author that schools of nursing may not include genetics in the curriculum until it is tested on State Board exams. State Boards do not test content areas until they are included in practice. The dilemma is that genetics care will be limited in practice by nurses' lack of knowledge. A proactive response is needed. Awareness of the need to develop skill in genetics care is a necessary first step, but more steps are needed. Additionally, some respondents continued to feel that genetics was not essential, applicable or relevant. Even more concerning is that less than 1% of programs listed ethics as a course that included genetics content. It is essential that academia become proactive in recognizing the challenges that nurses and consumers will encounter as genomic discoveries emerge in clinical practice, and incorporate into curriculum an ethical framework to assist in the difficult decision making ahead.
American Association Colleges of Nursing
The new Essentials of Baccalaureate Education for Professional Nursing Practice recommended by the American Association of Colleges of Nursing (AACN, 1998) provides direction for the academic preparation of the nurse to be ready for the new realities of health care delivery. This document recognizes that advances in genetic knowledge and interventions will have a major impact on nursing practice. Genetics as an evolving trend is recognized as a component of several of the core competencies that should be included in nursing preparatory education. A professional ethical framework is identified as a key element of nursing preparation to enable the nurse to be able to make and assist others in making ethical decisions. It is crucial that curriculum designers of basic nursing education begin the tedious work of curriculum revision to address content, methodologies, and strategies to integrate genetics into nursing education of all nurses. Lack of nursing faculty education about genetics is a significant barrier to increasing genetics content in nursing curriculum. Since 1977 the University of Cincinnati has offered a program designed to enhance faculty members' knowledge and ability to integrate genetics content into nursing education [www.gpnf.org]. The National Institute for Nursing Research also offered a Summer Genetics Institute focusing on faculty preparation during 2000. It is hoped that both programs will continue to be offered for several years after 2000.
Advanced Nursing Practice
There is also recognition of the need for preparation of advanced practice nurses to be able to understand genetics science, to design genetics services, and to provide appropriate interventions. Some masters preparation programs offer genetics content
A model program where genetics content has been included in the design of a continuing education program for advanced practice nurses is in oncology
either as electives or as a major focus of their coursework. There are currently five programs that offer graduate level genetics programs for nurses (Williams, 1999). Discussion about the type and level of knowledge needed by all advanced practice nurses, as well as those advanced practice nurses who are specialists in genetics, has occurred and will need to be considered as the Essentials of Masters Advanced Practice Nursing is utilized for curriculum design (AACN, 2000). Additionally, the genetics knowledge of those advanced prepared nurses already in practice needs to be considered. A model program where genetics content has been included in the design of a continuing education program for advanced practice nurses is in oncology (Cassells, Gaul, & Masny, 1999).
A limited number of continuing education programs are designed to prepare nurses already in practice to incorporate genetics information into current services. A survey done in 1998 of 68 nursing specialty organizations reported that only 30% were planning to offer content on genetics for future continuing educational offerings (Monsen & Anderson. 1999). Some of the hesitancy is because of lack of knowledgeable speakers and insufficient understanding of what is applicable. An attempt to provide a baseline understanding of the content recognized as essential for all practicing nurses was initiated at a 1997 meeting at the NIH. Experts in genetics met to discuss the key components of genetic knowledge that are necessary for all nurses. This work provided the foundation for a research study which identified core competencies for all nurses in genetics (Jenkins, Dimond. & Steinberg, 2000). Educational preparation is a beginning step in assuring that all nurses will be able to translate new genetic knowledge and skills into deliberations about health care decisions.
Nursing licensing and certification examinations influence the educational preparation of nurses and ultimately the quality of services provided. A 1997 survey of licensing and certifying bodies to assess the amount and nature of genetic information on exams indicated that limited genetics topics were included (Lea, Jenkins, & Monsen, 1999). A survey of State Boards of Nursing indicated similar lack of genetics content in licensure exams (Monsen et. al. 2000). These results are not surprising but do indicate the need to strengthen the inclusion of genetics questions on such examinations in preparation for modern day health care delivery.
ISONG is developing the mechanism for credentialing of nurses who specialize in genetics. Review of the nurse's qualifications by examining a portfolio that illustrates specific education and clinical experience in genetic nursing practice will be the mechanism utilized to measure knowledge, skill, and clinical competence (Anderson, Monsen, Prows, Tinley, & Jenkins, 2000). Certification in genetics specifically for nurses is a goal of ISONG. The first step towards this as a possibility began with ANA recognition of genetic nursing as a nursing specialty (ISONG, 1998).
Implications for Practice
As more is learned about the contribution of genetics to health and disease, nursing roles will expand in the delivery of genetic health care in all settings. An ISONG committee developed a document in collaboration with the American Nurses Association that outlines the scope and standards of genetics clinical nursing practice (ISONG, 1998). The scope of genetics nursing practice is described as basic and advanced. Genetics nursing practice at the basic level includes assessment to identify risk factors, planning of care, interventions such as information or services, and evaluation of the client for referral to genetic services. Advanced nurses who practice in genetics provide genetic counseling, case management, consultation, and evaluation of clients, families, resources, or programs. This document further defines education and experience required by the nurse to adequately integrate genetics into practice.
Genetics-related nursing practice includes care of patients who have genetic conditions, individuals who may be predisposed to develop or to pass on a genetic condition, or persons seeking information or referral for additional genetic services
All components of the nursing process offer opportunities for the nurse to identify genetic information that may be helpful to the care of individual patients and families.
(Lea, Jenkins & Francomano,1998). All components of the nursing process offer opportunities for the nurse to identify genetic information that may be helpful to the care of individual patients and families. Examples include: assessment of family and reproductive history to identify the potential of high risk for an illness (i.e. colon cancer); screening; diagnosis; health teaching; counseling; testing; and intervention. Nurses will continually be challenged to delineate the role they assume in offering genetics services in conjunction with other genetics specialists and tailored to their specialty setting. The Oncology Nursing Society developed two position statements that specify the role of the oncology nurse in cancer genetic counseling which offer examples of such tailoring (ONS, 1997a; ONS, 1997b). Continuing efforts will need to address what aspects of genetics all nurses will need to integrate into their practice.
Recognition of administrators within nursing schools, health care facilities, and funding agencies of the importance of genetics will be an important factor to the integration of genetics into the nursing role. Once administrators recognize that all health care settings will be impacted by these discoveries, enhanced availability of access to quality services will be a goal. Provision of collaborative teams to offer services in diverse settings will require an economic investment to prepare and support staff to offer cost effective and efficient care. Economic investments in educational preparation, allocation of human resources, and space to offer new models of care that focus on wellness counseling, diagnostics, and ethical considerations is needed now. Ethical considerations are an example of such an application area for genetics, which will have implications for all.
Ethical Considerations and Challenges
Maximizing the utilization of genetic information to benefit individuals and families will require a social environment where that information is not used against them (Giarelli & Jacobs, 2000). Although considerable attention has been paid to the potential for misuse of genetic information, significant issues will increasingly present themselves to both professionals and consumers of genetics care. A survey of Oncology Nursing Society Genetics Special Interest Group members and members of ISONG explored those ethical issues of most concern and most frequently encountered (Gaul, Cassells, Lea, Calzone, & Jenkins, 1999). The ethical issue of protection of patient confidentiality, both in general practice and as a result of genetic screening, was the issue of most concern to respondents and was increasingly encountered. Issues of potential disruptions in family relationships resulting from genetic screening as well as adequate understanding and sufficient provision of information to make informed decisions were also identified as ethical issues of moral concern.
Nurses are being challenged to identify and evaluate strategies that will assist them to effectively address such ethical dilemmas in their clinical practice (Rieger & Pent, 1999). An ethical assessment framework (EAF) may be valuable as a decision-making method that can assist nurses to logically address ethical dilemmas (Cassells, Gaul, Lea, Calzone, & Jenkins, 1999). Education about such models in nursing programs is needed to guide nurses through a logical progress of analysis of genetic issues. The EAF process includes identification of the ethical issue, gathering of sufficient information about the problem, assessing potential actions/options, applying ethical justification, determining available resources, and then planning. implementing, and evaluating decision outcomes for individuals and their families.
Nurses have also participated in national bodies working to design ethical national policy that impacts society. The Secretary's Advisory Committee on Genetic Testing (SACGT) is such an example. SACGT is a working group that was chartered in 1998 to advise the Department of Health and Human Services (DHHS) on the many issues raised by the development and use of genetic tests. Nurses have been visible and active in the planning of the public consultation process, the design, and the review of recommendations. Nurses have already provided testimony to SACGT offering views from nursing organizations on the major issues including medical, scientific, ethical, legal, and social aspects related to access and quality of genetic tests.
Genetics education has implications for the influencing of a wide spectrum of policy issues. Nurses have the ability to provide practical, ethically sound, and effective information to prepare them to be active participants in the policy arena. Policies that affect patients, such as what is included in informed consent about genetic testing, need to be considered. Policies that guide the collection, recording, and use of genetic information will need input from nurses. Policies that provide the necessary safeguards to promote successful utilization of this new technology in society offer opportunities for nurses to voice concerns about those items of most importance to them both personally and professionally. Genetics discoveries offer exciting options for the health care of the future, but only if handled appropriately. This necessitates that nurses focus on both risks and benefits of genetics information to assure quality outcomes for society.
The historical perspective of genetics services may offer little to the health care professional of the future for designing education, clinical, and research programs to meet the future demands of consumers as this is uncharted territory. Nurses, however, have begun to identify and address the challenges and opportunities resulting from integration of genetics into health care of all individuals and families (Pesut, 1999). At times the work may feel overwhelming and slightly confusing. On the other hand, this work captures the imagination and offers excitement, potential, and opportunity. The challenge for nursing is to recognize the difference that can be made if we all pool our resources and approach this initiative as a professional body. Think of the impact that nursing can have for the care of all persons if adequate genetics education, accessible services that integrate genetics, and ethical standards are established proactively.
What an exciting time to be involved in health care. Genetic care has the potential to move at an exponential rate building on the progress of the past. Significant work lies ahead for the scientific community to interpret the meaning of the human genetic code, to identify implications of genetic variants, and to translate this into improved health care options. Nurses have a responsibility to become active participants in confronting the demands resulting from this new knowledge for education, practice, research, and policy.
Jean F. Jenkins PhD, RN
Jean Jenkins received her BSN from the University of Maryland in 1975, her MSN from Catholic University of America in 1984 and her PhD from George Mason Unviersity in 1999. She is currently a Clinical Nurse Specialist Consultant at the National Cancer Institute, NIH, responsible for clinical trial development and implementation including biomedical and nursing research. She also provides consultation for the integration of genetics into clinical research including genetic testing and prevention studies. Her current studies focus on outcomes of genetic testing for persons with Hereditary Non-polyposis Colorectal Cancer (HNPCC); chemoprevention for HNPCC; the genetics of smoking; and the diffusion of innovation.
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