FEATURES

Dealing with reality: Confronting the global nursing shortage

DNA and You

by Jean Jenkins and Kathleen Calzone

Life is full of surprises. Sometimes, through chance meetings, assignments or events, our lives are changed. We are both oncology nurses who, by chance, had the directions of our lives changed forever. In 1995, a mutual colleague introduced us and suggested we organize a workshop for nurses to discuss the need for genetics education.

Left to right: Kathleen Calzone, NHGRI Director Dr. Francis Collins, Jean Jenkins, and from ANA, Pam Hagan and Laurie Badzek.

At the time, cancer care was just beginning to be influenced by research indicating that genetic changes increase breast and ovarian cancer risk. Independently of one another, we both recognized that such research could change the way oncology nurses provide care. We were aware of the expanding knowledge available to patients and their families on the subject, knowledge critical to making informed decisions about care. Importantly, it was clear to both of us that we, and the nursing profession at large, were not prepared to use this knowledge to help our patients. Our passion to translate the benefits of genetic/genomic research to improved patient care has kept us working together ever since and has grown into a multidimensional initiative, the Genetic/Genomic Nursing Competency Initiative (GGNCI).
           
Even though we humans have DNA that is 99.9 percent alike, we as individuals still look, act and behave differently. The DNA that makes up our genes ultimately influences the form and function of our bodies and affects our health. Research is helping to illuminate the 0.1 percent variation, determining the implications of that difference with regard to health outcomes—why some of us respond to drugs while others don’t; why some are at an increased risk for diseases and others aren’t; and why some benefit from earlier screening tests and others do not.
 
This 0.1 percent variation in DNA also influences working partnerships, potentially creating synergy and better outcomes because of differences in the way we humans approach challenges. That’s what happened with the two of us. The reason we work so well together—keeping each other motivated and on task and reviewing draft documents from our individual perspectives—is because we are so different.

Since conducting the genetics education workshop for nurses in 1995, we have collaborated to develop core competencies in cancer genetics for advanced practice nurses, implemented a nursing genetics and ethics study, and published several articles and books on these subjects. Along the way, we enlisted others to assist us, to make sure we considered multiple viewpoints as we began to design a vision of nursing competency for the 21st century. This is how the Honor Society of Nursing, Sigma Theta Tau International became an integral contributor to the multidimensional Genetics/Genomics Nursing Competency Initiative. See timeline.

One of our ideas, encouraged by the leadership of the National Human Genome Research Institute (NHGRI) at the National Institutes of Health, U.S. Department of Health & Human Services, was to publish a series of articles on the relevancy of genetics and genomics for nurses. The promise of personalized medicine made possible by genetic research has implications for all nurses. Moreover, it requires that steps be taken to ensure that consumers have access to knowledgeable providers who translate genetic/genomic research into information available for clinical care. Sigma Theta Tau International already had appointed a nursing representative to the National Coalition for Health Professional Education in Genetics (http://www.nchpeg.org), indicating the honor society’s recognition of the relevancy of genetics and genomics education for its membership.

Recognizing that the honor society’s Journal of Nursing Scholarship (JNS) was a highly respected publication, we approached Sue Thomas Hegyvary, then editor of the journal, about the possibility of publishing a genomic series. The JNS editorial board approved the concept developed by an expert panel. For more than two years, the journal published peer-reviewed articles summarizing evidence that genetics and genomics science was beginning to transform our health care services and demonstrating the impact of these transformations on nursing practice.

The honor society has now published this series of articles in an e-book, nurseAdvance Collection on Genomics in Nursing and Healthcare (Jenkins, 2007), thus providing a valuable educational resource for nurses. This series, which helps make nurses aware of the emerging body of literature, also documents the need for more nurses who are competent in genetics and genomics. In fact, in debating a set of draft nursing competencies in genetics and genomics at a September 2005 invitational meeting of key stakeholders, held in collaboration with the American Nurses Association, the issue was not so much “if” but “when.” Fifty participants, including Carol Picard, president of the honor society, reviewed, discussed and modified a draft document that was ultimately published under the title Essential Nursing Competencies and Curricula Guidelines for Genetics and Genomics.

The ultimate goal in developing this document was to prepare the entire nursing workforce—all registered nurses regardless of academic preparation, role or clinical specialty—to deliver geneetically and genomically competent health care. The Honor Society of Nursing, Sigma Theta Tau International is one of 49 nursing organizations and consumer groups that have endorsed the competencies outlined in the document, and the endorsing organizations have begun their own outreach efforts, including annual meeting presentations, publications and research initiatives focused on genetics/genomics competency.

A key to maintaining momentum of these efforts is good communication. We keep these endorsing organizations aware of our efforts and their counterparts’ progress to date, as well as inform them of genetic/genomic advances via a listserv and newsletter. These competencies provide a foundation from which to build. For information on how your organization can endorse the competencies or to obtain a copy of the competency monograph, visit http://www.genome.gov/17517037.

The GGNCI project has now grown into a multiphased initiative that seeks to inform and persuade nurses of the importance of providing nursing care that integrates genetic/genomic information and services. At an October 2006 meeting of key stakeholders to draft a strategic implementation plan, Picard again represented Sigma Theta Tau International. Development of a detailed, five-year plan for integrating these competencies into nursing practice, nursing curricula, NCLEX, specialty certification, continuing education and accreditation is a daunting challenge, and realization of these goals will only be achieved with ongoing collaboration among nursing organizations, other health care professionals, federal agencies and academic institutions. Fortunately, many key stakeholders, including the honor society, are now facilitating development of tools needed by faculty members and practicing nurses and for regulatory/quality control efforts.

One such “toolkit,” suggested at the strategic planning meeting, is designed for faculty members. In collaboration with the American Association of Colleges of Nursing, a meeting was held in September 2007 to discuss development of a resource that 1) illustrates the relevancy of genetics/genomics for nurses; 2) provides the educational resources that prepare nurses with the necessary skills; 3) outlines realistic expected outcomes; and 4) provides connections to “champions” who can provide educational consultation.

Plans to constitute a working group for the purpose of finalizing toolkit components—mechanism, methods, messages, content and format—are in process, which will require funding. One potential mechanism for toolkit development and dissemination is an interdisciplinary consortium, yet to be developed, that creates a genetics/genomics infrastructure for educational resources relevant across disciplines.

Another suggestion that came out of the strategic planning meeting was establishment of a national research agenda for genetic/genomic nursing outcomes. We are planning two meetings, in collaboration with the American Academy of Nursing, to establish a research agenda plan based on a systematic evaluation of the current state of the science. Inadequate evidence or availability of outcome data is hindering efforts to incorporate genetics and genomics information into curricula, and is also delaying recognition of the field with regard to licensure and accreditation of academic and health care organizations.

National leadership is needed to establish priorities for development of research that produces the essential outcome data needed to effect change and improve the quality of public health. Our goal is to successfully translate genetics/genomics discoveries gained through research into knowledge that can be incorporated into practice and advance quality health care.

Improved health outcomes will only be realized if nurses are made aware of the opportunities brought about by genome research and its application to practice. The advances in human genome science are about identity and inheritance expressed in and through human health and disease, as well as the fundamental nature of life itself. The genomic knowledge revolution is forcing us to think about who we are and what governs our behavior, and about factors that affect the health of our bodies and the integrity of our communities.

The responsibility for preparing for these challenges rests squarely on your shoulders. DNA is a personal part of each and every one of you. Now it’s time to make it part of the professional you as well. RNL

Jean Jenkins, PhD, RN, FAAN, is senior clinical advisor at the National Institutes of Health, National Human Genome Research Institute, in Bethesda, Maryland. Kathleen Calzone, MSN, RN, APNG, FAAN, is senior nurse specialist (research) at the National Institutes of Health, National Cancer Institute, Center for Cancer Research, Genetics Branch, in Bethesda, Maryland.  

References:
Consensus Panel on Genetic/Genomic Nursing Competencies. (2006). Essential nursing competencies and curricula guidelines for genetics and genomics. Silver Spring, MD: American Nurses Association.

Jenkins, J. (Ed.). (2007). nurseAdvance collection on genomics in nursing and healthcare. Indianapolis, IN: Sigma Theta Tau International.

Jenkins, J., & Calzone, K. (2007). Genomics to health: Establishing the essential nursing competencies for genetics and genomics. Journal of Nursing Scholarship, 39(1), 10-16.