Precision Health and Genomics
Precision Health (PH) is a healthcare approach that personalizes care based on each person’s unique biological makeup—meaning the full set of genes, proteins, and other biological factors—along with their clinical history, environment, and lifestyle.
One of the most vital fields of modern healthcare development, enabling Precision Medicine and Precision Health, is genomics, with significant potential to benefit both patients and healthcare providers. New techniques are improving options around screening, diagnosis, treatment, pharmacogenomics, and general lifestyle advice, and have the potential to affect the work of every practicing nurse in the U.S.
Patients now expect nurses to understand the care issues related to genetics; while the ethical dimension is of paramount concern to nurses, they must also consider the ethical challenges of offering these new treatments. At the American Nurses Association (ANA), we are providing nurses the tools they need to address these challenges, both by educating on the specifics of new treatments and by promoting a better understanding of the ethical issues surrounding them.
Setting the standard
In 2005, ANA partnered with the National Cancer Institute, the National Human Genome Research Institute, and the Office of Rare Diseases of the National Institutes of Health to convene a panel of nurse leaders to identify, review, seek public comment, and publish a new framework for educating nurses on the issue. The panel’s efforts produced The Essential Nursing Competencies and Curricula Guidelines for Genetics and Genomics, which established the minimum foundation for preparing the modern nursing workforce to deliver competent, genetic- and genomic-focused care.
Endorsed by 47 representative nursing organizations and the National Coalition of Health Professional Educators in Genetics (NCHPEG), and updated in a new edition in 2008, the document remains the gold standard for practicing nurses regarding the impact of genetics and genomics.
Find out more about ESSENTIALS OF GENOMIC NURSING: COMPETENCIES
Find out more about ANA’s Center for Ethics and Human Rights
Additional resources
In such a fast-moving field, new thinking and approaches can emerge regularly. To help nurses stay on top of developments – both in practice options and ethical questions – ANA has collated an extensive set of resources and links to organizations related to Precision Health and Genomics.
Ethical, Legal, and Social Issues
National Coalition for Health Professional Education in Genetics (NCHPEG)
NCHPEG is a national coalition of more than 50 health‑related organizations working together to advance education and access to information on human genetics for health professionals. Its members span multiple disciplines and sectors, including professional associations, consumer and volunteer groups, government agencies, private industry, managed care organizations, and genetics societies. By leveraging the collective expertise of these diverse groups, NCHPEG promotes genetics education to improve healthcare nationwide.
Mission:
NCHPEG’s mission is to improve the nation’s health by promoting health professional education and access to timely information on advances in human genetics by:
• Integrating genetics content into the knowledge base of health professionals and students of the health professions,
• Developing educational tools and information resources to facilitate the integration of genetics into health professional practice, and
• Strengthening and expanding the Coalition's interdisciplinary community of organizations and individuals committed to coordinated genetics education for health professionals.
International Society for Nurses in Genetics (ISONG)
ISONG is a global nursing specialty organization focused on advancing the scientific and professional development of nurses in genetics and genomics. Its vision is caring for people’s genetic and genomic health by supporting nurses in the responsible use and management of genomic information.
ISONG Goals:
• Support education and professional development for nurses in genetic and genomic care.
• Integrate the nursing process into genetic and genomic health services.
• Promote genetics and genomics content across all levels of nursing education.
• Advance standards of practice and nursing research in human genetics.
• Foster collaboration and dialogue with other disciplines and stakeholders
Genomic Education Resources
Centers for Disease Control and Prevention
Genomics and Precision Health
Genomics and Precision Health Weekly Update
National Cancer Institute
NCI PDQ® Cancer Genetics Information Summaries
The Genetics of Cancer
NCI Cancer Genetic Services Directory
Biomarker Testing for Cancer Treatment
Genetic Testing for Inherited Cancer Susceptibility Syndromes
NCI Dictionary of Genetic Terms
National Human Genome Research Institute
Family Health History for Healthcare Professionals
Global Genetics and Genomics Community
Healthcare Provider Genomic Education Resource
Inter-Society Coordinating Committee for Practitioner Education in Genomics
Talking Glossary
Books
- Genetics/Genomics Scope and Standards Current Edition
- Genetics/Genomics Scope and Standards First Edition
- Essential Genetic and Genomic Competencies for Nurses With Graduate Degrees
Released in March 2012 by ANA in partnership with the International Society Of Nurses in Genetics, this publication built on much of the work contained in the Essentials of Genetic and Genomic Nursing: Competencies, Curricula Guidelines and Outcome Indicators (2nd Edition).
Health care organizations with an interest in genetics and genomics
- The U.S. Department of Energy (DOE) and the National Institutes of Health (NIH).
Devoted 3% to 5% of their annual Human Genome Project (HGP) budgets toward studying the ethical, legal, and social issues (ELSI) surrounding availability of genetic information. This represents the world's largest bioethics program, which has become a model for ELSI programs around the world.
- The National Human Genome Research Institute
Established in 1990 as an integral part of the Human Genome Project (HGP) to foster basic and applied research on the ethical, legal, and social implications of genetic and genomic research for individuals, families, and communities.
- International Society for Nurses in Genetics (ISONG)
A global nursing specialty organization dedicated to fostering the scientific and professional growth of nurses in human genetics and genomics worldwide.
- Centers for Disease Control (CDC) - Office of Genetics and Disease Prevention
The branch of the CDC that provides public health professionals with current information on human genetic research and gene discoveries.
Essentials of Genetic and Genomic Nursing: Competencies, Curricula Guidelines, and Outcome Indicators, 2nd Edition
In 2005, ANA partnered with the National Human Genome Research Institute, the National Cancer Institute, and the Office of Rare Diseases of the National Institutes of Health to host a consensus panel of nurse leaders to identify, review, seek public comment and publish essential genetic and genomic competencies for all registered nurses. The document was based on the review of earlier peer-reviewed published work reporting practice-based genetic and genomic competencies, guidelines, and recommendations. The resulting publication, The Essential Nursing Competencies and Curricula Guidelines for Genetics and Genomics was endorsed by 47 representative nursing organizations and in January 2007 by the National Coalition of Health Professional Educators in Genetics (NCHPEG) .
In 2009, Essentials of Genetic and Genomic Nursing: Competencies, Curricula Guidelines, and Outcome Indicators, 2nd Edition was published (See Below). This updated edition succinctly addresses and articulates the competencies essential for all nursing practice, as well as the subsequent curricular guidelines for all nursing education. The outcome indicators are an adjunct to the essential nursing competencies and curricula guidelines for genetics and genomics and are intended to define for each competency the knowledge and practice indicators. Developed by an independent panel of nurse leaders from clinical, research, and academic settings, this monograph reflects their goal: to establish the minimum basis for preparing the nursing workforce to deliver competent genetic and genomic-focused nursing care. To supplement its primary content, it also includes a comprehensive selection of resources that pertain directly to the competencies and guidelines. As a result, Essentials of Genetic and Genomic Nursing: Competencies, Curricula Guidelines, and Outcome Indicators, 2nd Edition, proves to be an essential resource for nursing professional development at all levels.
Publications and ongoing online resources
- American Nurse Today:
Nursing leaders hold the key to translating genomics into practice
- A Method for Introducing A New Competency (MINC) Genomics
Published by NCHPEG, this website provides resources for nursing leaders at all levels of genomics competency, ranging from basic knowledge about genomics to its practical impact on health care systems and policies.
- The Hastings Center: Ethics and Human Research
Published on a bi-monthly basis, this peer-reviewed journal features scholarly articles and columns on genetics-related subjects.
- G2C2 website
G2C2 is a website that provides high quality educational resources for group instruction or self-directed learning in genetics/genomics by health care educators and practitioners.
- Global Genetics and Genomics Community (G3C) website
A bilingual collection of unfolding case studies for use with students and practicing healthcare providers that helps learners understand basic genetic/genomic concepts and their application to practice.
- Addressing the ethical challenges in genetic testing and sequencing of children
A 2015 report from the Clinical Sequencing Exploratory Research Consortium’s Pediatrics Working Group into predictive genetic testing of children.