TY - JOUR
T1 - The Global Landscape of Nursing and Genomics
AU - Calzone, Kathleen A.
AU - Kirk, Maggie
AU - Tonkin, Emma
AU - Badzek, Laurie
AU - Benjamin, Caroline
AU - Middleton, Anna
N1 - Funding Information:
1 Xi, Research Geneticist, National Institutes of Health, National Cancer Institute, Center for Cancer Research, Genetics Branch, Bethesda, MA, USA 2 Upsilon-Xi at Large, Professor of Genetics Education, University of South Wales, Pontypridd, UK 3 Senior Research Fellow, University of South Wales, Pontypridd, UK 4 Alpha Rho & Nu Omega, Director and Professor, University of North Carolina Wilmington School of Nursing, Wilmington, SC, USA 5 Visiting Fellow, College of Health & Wellbeing, University of Central Lancashire, Preston, England & Genetic Counsellor, Liverpool Women’s NHS Hospital Trust, Liverpool, England 6 Head of Society and Ethics Research, Connecting Science, Wellcome Genome Campus, Cambridgeshire, UK
Funding Information:
Country-specific policy initiatives have largely surrounded investments in large-scale genomic biomedical research. These include National Call for Research into Preparing Australia for the Genomics Revolution in Health Care; Brazil’s National Institutes of Science and Technology and its creation of the Family Cancer Network and Institute of Oncogênomica; China Kadoorie Biobank; Japan’s Genomic Medical Realization Promotion Council; the U.K. 100,000 Genome Project; and the U.S. Precision Medicine Initiative, now renamed the All of Us Research Program. Initiatives have also focused on specific health issues or ethical and regulatory considerations, such as Pakistan’s Punjab Thalassemia Prevention Program; Germany’s Genetics Diagnostics Law; Switzerland’s National Criteria for Centers of Excellence in Rare Diseases; Taiwan’s recommendations for prenatal and newborn screening; the German Ethics Council’s position on genetic diagnosis; Turkey’s regulation of Genetic Disease Diagnosis Centers; and the U.K. Rare Disease Strategy. However, only 10 of 18 reported these national initiatives acknowledge the implications for nurses. Fewer still include genomic training for nursing and other healthcare professions, although the United Kingdom’s Genomics Education Programme is one exemplar (HEE, 2017).
Funding Information:
This project was funded through a grant from the Wellcome Genome Campus Advanced Courses and Scientific Conferences and supported by Health Education England and the Intramural Research Programs of the National Institutes of Health, National Cancer Institute, and National Human Genome Research Institute, Division of Policy, Communications, and Education.
Publisher Copyright:
© 2018 Sigma Theta Tau International
PY - 2018/5
Y1 - 2018/5
N2 - Purpose: Nurses have a pivotal role in bringing the benefits of genomics and precision medicine to everyday health care, but a concerted global effort is needed to transform nursing policy and practice to address widely acknowledged deficits in nurses’ genomic literacy. The purpose was to conduct a global country and organization review of nursing engagement with genomics, informing a landscape analysis to assess readiness for integration of genomics into nursing. Design: Global nursing leaders and nursing organizations were recruited using a purposive sampling strategy to complete an online survey that assessed the scope of genomic integration in practice and education, challenges and barriers, and priorities for action. Methods: The survey was administered online following an orientation webinar. Given the small numbers of nurse leaders globally, results were analyzed and presented descriptively. Findings: Delegates consisted of 23 nurse leaders from across the world. Genomic services were offered predominantly in specialty centers consisting mostly of newborn screening (15/18) and prenatal screening (11/18). Genomic literacy and infrastructure deficits were identified in both practice and education settings, with only one country reporting a genetic/genomic knowledge and skill requirement to practice as a general nurse. Conclusions: These data provide insights into the commitment to and capacity for nursing to integrate genomics, revealing common themes and challenges associated with adoption of genomic health services and integration into practice, education, and policy. Such insights offer valuable context and baseline information to guide the activities of a new Global Genomics Nursing Alliance (G2NA). The G2NA will use the landscaping exercise as a springboard to explore how to accelerate the integration of genomics into nursing healthcare. Clinical Relevance: Genomics is relevant to all healthcare providers across the healthcare continuum. It provides an underpinning for understanding health, risks for and manifestations of disease, therapeutic decisions, development of new therapies, and responses to interventions. Harnessing the benefits of genomics to improve health and care outcomes and reduce costs is a global nursing challenge.
AB - Purpose: Nurses have a pivotal role in bringing the benefits of genomics and precision medicine to everyday health care, but a concerted global effort is needed to transform nursing policy and practice to address widely acknowledged deficits in nurses’ genomic literacy. The purpose was to conduct a global country and organization review of nursing engagement with genomics, informing a landscape analysis to assess readiness for integration of genomics into nursing. Design: Global nursing leaders and nursing organizations were recruited using a purposive sampling strategy to complete an online survey that assessed the scope of genomic integration in practice and education, challenges and barriers, and priorities for action. Methods: The survey was administered online following an orientation webinar. Given the small numbers of nurse leaders globally, results were analyzed and presented descriptively. Findings: Delegates consisted of 23 nurse leaders from across the world. Genomic services were offered predominantly in specialty centers consisting mostly of newborn screening (15/18) and prenatal screening (11/18). Genomic literacy and infrastructure deficits were identified in both practice and education settings, with only one country reporting a genetic/genomic knowledge and skill requirement to practice as a general nurse. Conclusions: These data provide insights into the commitment to and capacity for nursing to integrate genomics, revealing common themes and challenges associated with adoption of genomic health services and integration into practice, education, and policy. Such insights offer valuable context and baseline information to guide the activities of a new Global Genomics Nursing Alliance (G2NA). The G2NA will use the landscaping exercise as a springboard to explore how to accelerate the integration of genomics into nursing healthcare. Clinical Relevance: Genomics is relevant to all healthcare providers across the healthcare continuum. It provides an underpinning for understanding health, risks for and manifestations of disease, therapeutic decisions, development of new therapies, and responses to interventions. Harnessing the benefits of genomics to improve health and care outcomes and reduce costs is a global nursing challenge.
UR - http://www.scopus.com/inward/record.url?scp=85044732954&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85044732954&partnerID=8YFLogxK
U2 - 10.1111/jnu.12380
DO - 10.1111/jnu.12380
M3 - Article
C2 - 29608246
AN - SCOPUS:85044732954
SN - 1527-6546
VL - 50
SP - 249
EP - 256
JO - Journal of Nursing Scholarship
JF - Journal of Nursing Scholarship
IS - 3
ER -