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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

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 the availability of genetic information. This represents the world's largest bioethics program, which has become a model for ELSI programs worldwide.
 
The National Human Genome Research Institute's (NHGRI) Ethical, Legal, and Social Implications (ELSI) Research Program was 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. The ELSI Research Program funds and manages studies, and supports workshops, research consortia, and policy conferences related to these topics.
 
The HGP & ELSI program is designed to address the ethical, legal, and social implications of human genetics research.

 

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

Health care organizations with an interest in genetics and genomics

  • 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.
  • 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.  

Publications and ongoing online resources

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