Nursing genetics and genomics: The International Society of Nurses in Genetics (ISONG) survey
Introduction
The National Institute of Health (NIH) defines genetics as the “study of genes and their roles in inheritance of disease,” while genomics involves “the study of all of a person's genes, including the interaction of genes with each other and with the environment” (National Institute of Health, 2016). The importance and relevance of genetics and genomics (hereafter genomics for both terms) in nursing research, education, and clinical practice are becoming increasingly evident (Calzone et al., 2010; Calzone et al., 2013a, Calzone et al., 2013b, Calzone et al., 2013c; Genomic Nursing State of the Science Advisory Panel et al., 2013; Kirk et al., 2011; Williams, 2015). Nurses work at the forefront of translational science and can develop, lead, and implement genomic-based innovations in research, education, and practice (Tully and Grady, 2015). However, nurses need training and confidence in engaging with genomic-based techniques before they can contribute to precision medicine.
Given the exponential increasing pace of genomic research, it remains difficult for many nurses to stay up to date with current science. A U.S. national survey of the nursing workforce, reported that 57% of nurses believed that their genomic knowledge base was fair or poor (Calzone et al., 2013a, Calzone et al., 2013b, Calzone et al., 2013c). This statistic speaks to the significant gap regarding the preparation of the nursing workforce for the future of personalized healthcare. With the advent of the Precision Medicine Initiative, genomic innovation and its application to clinical care, are at the forefront of moving healthcare from a “one-size-fits-all” approach to considering individual differences, environmental influences, and responses to treatment to optimize disease and symptom management. Nurses are critical members of the healthcare workforce and with appropriate education and training in genomics, are can engage in practice and research that greatly contributes to realizing the potential of precision medicine (Williams, 2015).
The International Society of Nursing in Genetics (ISONG), an international professional organization charged with fostering scientific and professional development in the discovery, interpretation, application, and management of genomic information for the health of people worldwide (International Society of Nurses in Genetics, 2010). ISONG membership spans multiple areas of professional expertise; for over 25 years, members have made significant contributions to genomic science through innovative research, translation of research findings into clinical practice and development of innovative training programs for future nurses (Alexander, 2015). By identifying obstacles in educating the nursing workforce in genomics, ISONG serves as a mechanism for additional training in genomic competencies through an annual international conference and multiple free webinars and other educational resources. Given that ISONG promotes engagement in genomic-related activities, we evaluated the extent that members are involved in such activities. The overall purpose of the study was to assess ISONG's contribution to the Precision Medicine Initiative by surveying its members about their genomic-related activities and their experiences regarding the integration of genomics in the nursing profession. The ultimate goal is identifying areas of research, education, and practice that merit improvement within ISONG and the nursing workforce.
Section snippets
Genomic Nursing Education
Nursing education needs to evolve in order to integrate state of the art genomic science, such as complex biostatistics methods, into nursing education, boost the application of research findings from bench to bedside, and the translation of this knowledge into areas of clinical importance. A core element of the National Institute of Nursing Research (NINR) Strategic Plan is the genomic education of nurses, and the integration of this knowledge into nursing science, so that nurses can spearhead
Methods
This is a prospective, cross-sectional, descriptive, web-based survey. The Columbia University Institutional Review Board (IRB # AAA01768) and the ISONG research board approved the study protocol; the latter also granted access to potential participants' email addresses. A disclaimer stated that this was an independent investigator-initiated study, explained its purpose and that participation was voluntary, and ensured confidentiality of responses. Participants' contact information was not
Results
Out of 350 ISONG members, 231 completed the survey (response rate 66%). Respondents were predominantly female (92.1%), Caucasian/White (91.7%), most between 40 and 65 years old (Table 1). Most (54.6%) held a PhD in nursing and another 35.8% held a master's degree. The majority (78.2%) was employed full-time; percent effort (%FTE) was almost equally divided in research, teaching, and clinical care. Participants with a doctorate in nursing spent a greater proportion of %FTE in research (two-sided
Discussion
This survey of ISONG members provides unique information about global practices of nurses in genomics. It was hypothesized that ISONG members would be more likely to have already acquired advanced training in genomics, and to incorporate this knowledge into many different areas of research, education, and clinical practice. Results suggested that ISONG members who participated in the survey had advanced degrees and additional training in genomics. Participants also reported that the integration
Conclusions
There is substantial evidence regarding the wide contribution of ISONG members to genomic research, education, clinical practice, and public health (Alexander, 2015; Andrews et al., 2010; Calzone et al., 2013a, Calzone et al., 2013b, Calzone et al., 2013c; Katapodi et al., 2017; Kirk et al., 2011; Musunuru et al., 2015; Hickey and Rezzadeh, 2013; Hickey et al., 2014a, Hickey et al., 2014b; Wung et al., 2013). The rapid incorporation of genomics on disease prevention, health promotion, disease
Conflicts of Interest and Sources of Funding
This work is not funded. The authors have no conflicts of interest to report.
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2022, International Journal of Nursing Studies AdvancesCitation Excerpt :For example, genetic variants are factors considered when evaluating disease risk and progression, differences in drug metabolism of opiates and blood thinners, and sensitivity to cancer treatment (Calzone et al., 2018; McCormick and Calzone, 2016; Taylor et al., 2017). However, globally, there is wide variability related to the amount and quality of genomics training for nurses (Hickey et al., 2018). In the U.S., there are training resources and programs available to train the next generation of nurse clinicians and scientists to utilize genomic information in providing care (Genomic Nursing State of the Science Advisory Panel et al., 2013; Tonkin et al., 2011; Williams et al., 2016).
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2022, Nurse Education TodayCitation Excerpt :Although there are some improvements in the integration of genomics into nursing education and practice, current evidence shows that nurses are not adequately prepared to implement recent advances in genomics in practice (Calzone et al., 2018b; Kok and Aydin, 2019; Seven et al., 2015). Studies conducted in different countries reported that nurses are willing, but they need educational sources and support from their senior staff and their institution to integrate genomics into daily nursing care (Chair et al., 2019; Hickey et al., 2018; Kronk et al., 2018). According to the Nursing Regulation, in Turkey, counseling families at risk for genomic conditions is the only genomic related responsibility mentioned as a responsibility of women's health nurses (“Turkish Nursing Regulation,” n.d.).
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2021, Genetics in MedicineCitation Excerpt :In addition, subspecialty certification for MDs is offered in Medical Biochemical Genetics (MBG) and in Molecular Genetic Pathology, the latter of which is jointly offered by the ABMGG and the American Board of Pathology. The important roles of the other members of the interdisciplinary team seeing genetics patients and their workforce issues have been previously addressed.6,7 The last major medical genetics workforce survey was conducted in 2003 at the completion of the Human Genome Project.8,9
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2021, Nursing OutlookCitation Excerpt :Doctoral knowledge elements for nurse scientist omics training are also established (Regan et al., 2018). Review of genomic nursing health policy trends, resources, and survey instruments consistently identify education and training, nurse educator and workforce capacity deficiencies as key challenges to genomic technology integration in clinical care settings (Anderson et al., 2015; Calzone et al., 2014; Calzone et al., 2016; Calzone et al., 2018a; Calzone et al., 2018b; Calzone et al., 2018c; Hickey et al., 2018; Maradiegue et al., 2013; Regan et al., 2018; Thompson & Vasquez Brooks, 2011; Rosenman et al., 2017). Nursing remains in need of additional support for training in genomics and clinical practice integration because significant portions of its workforce are associate degree prepared and educated prior to the uneven genomic competency adoption and implementation requirements in 2006 (Health Resources and Services Administration, 2019; National Academies of Science, Engineering, and Medicine, 2016).