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A Genomic Nursing State of Science Advisory Panel (AP) assembled in 2012 provided recommendations for furthering genomic nursing science assessing health outcomes. The AP provided targeted research topics designed to build the evidence of the value of genomic information1.

Achieving the Genomic Nursing Science Blueprint research recommendations more quickly, efficiently, effectively, and collaboratively is a priority. To achieve that, the National Institutes of Health National Human Genome Research Institute, National Cancer Institute, and National Institute of Nursing Research convened a second AP to identify strategies to promote the genomic nursing science recommended in the Blueprint which resulted in the creation of ONSEN.

Working groups were assembled to target the creation of a network and resources to facilitate the inclusion of omics in nursing science. These work groups focused on three primary initiatives: enhancing research collaborations; identification of common data elements; and education, training, and competency of nurse scientists.

  1. 1Calzone, K., Jenkins, J., et al. (2013). A Blueprint for Genomic Nursing Science. Journal of Nursing Scholarship, 45:1, 96–104. PMID# 23368636

Mission & Goal

Image of two women testing and studying in laboratory coats
Dr. Karin Reuter-Rice and clinical researcher coordinator, Stephanie Macy process samples to understand genetic and protein markers involved in pediatric acute traumatic brain injury.

The Goal of this site is to facilitate investigator driven research through creation of a collaborative research network infrastructure as a website that will provide information, resources, and networking opportunities.

Why focus on Nursing Science?

Nursing science transcends the boundaries of disease and research disciplines to better understand the experiences of individuals and families living with illness and to develop personalized approaches that maximize health and well-being for individuals at all stages of life, across diverse populations and settings1. Nursing research spans and integrates the behavioral and biological sciences to build the scientific basis for clinical practice, prevent disease and disability, manage and eliminate symptoms caused by illness, and enhance end-of-life and palliative care. As the understanding of genomics and other Omics expands, nursing research that integrates Omics has the opportunity to illuminate the biological, functional, and behavioral influences impacting health and disease, and to lay the foundation for personalized, Omics-based interventions that lead to improved patient outcomes and quality of life.

  1. 1The NINR Strategic Plan: Advancing Science, Improving Lives


The National Human Genome Research Institute and the National Institute of Nursing Research in collaboration with the National Cancer Institute provided funding for development of ONSEN. Working with the contractor, d'Vinci Interactive of Hagerstown, MD, the format and structure for this site were created.


A Blueprint for Genomic Nursing Science

A Blueprint for Genomic Nursing Science1 by Dr. Calzone, et al., summarizes recommendations of a 2012 Genomic Nursing State of Science Advisory Panel for furthering genomic nursing science to improve health outcomes. They offer targeted research topics for consideration to build the evidence of the value of genomic information.

A Path Forward for Genomic Nursing Research

A Path Forward for Genomic Nursing Research2 by Drs. Tully and Grady summarized NINR's efforts to advance the incorporation of genomics into nursing research.

Image of NINR Strategic Plan HomepageNational Institute of Nursing Research Strategic Plan

NINR's Strategic Plan: Advancing Science, Improving Lives, focuses on areas of science in which the health needs are greatest, and in which NINR-supported research can have the largest impact. The Plan is intended to be a living document, one which can be adapted as new opportunities and challenges arise.

Available at:

National Institutes of Health Symptom Science Model (NIH-SSM)

An article by Cashion & Grady (2015)3 describes the development of the National Institutes of Health Symptom Science Model (NIH-SSM) and how it can be used to organize and implement a genomic research program lead by nurse scientists. A follow-up article by Cashion et al. (2016)4 provides exemplars of nurse scientists applying the NIH-SSM to characterize phenotypes, identify and test Omics markers, and develop clinical interventions.

  1. 1 Calzone, K., Jenkins, J., et al. (2013). A Blueprint for Genomic Nursing Science. Journal of Nursing Scholarship.45:1, 96-104. PMID: 23368636
  2. 2 Tully L., Grady P. A Path Forward for Genomic Nursing Research. Res Nurs Health 2015;38(3):177-179. PMID: 25872111
  3. 3 Cashion AK, Grady PA, The National Institutes of Health/National Institutes of Nursing Research Intramural Research Program and the Development of the NIH Symptom Science Model. Nurs Outlook. 2015;63(4):484-7. PMID: 26187087
  4. 4 Cashion AK, Gill J, Hawes R, Henderson WA, Saligan L. National Institutes of Health Symptom Science Model sheds light on patient symptoms. Nurs Outlook. 2016;64:499-506. PMID: 27349632.

Quick Links

Data Sharing

Genomic Data Sharing (GDS)

  • Read about NIH's Genomic Data Sharing (GDS) policy, which applies to all NIH-funded research (e.g., grants, contracts, and intramural research) that generates large-scale human or non-human genomic data, regardless of the funding level, as well as the use of these data for subsequent research.


  • Search the database of Genotypes and Phenotypes (dbGaP) for data and results from studies that have investigated the interaction of genotype and phenotype in Humans.

National Institutes of Health (NIH) Resources

NIH Common Data Element (CDE) Resource Portal

  • Browse the CDE Resource Portal where information is housed on development of common data elements (CDEs) in clinical research, patient registries, and other human subject research. The goal of CDEs are to improve data quality and opportunities for comparison and combination of data from multiple studies and with electronic health records.

NIH CDE Repository


NINR: Innovative Questions

  • Read about NINR's Innovative Questions (IQ) initiative, designed to develop lists of creative and results-oriented research questions that could assist in guiding future research directions in nursing science.

NINR: Advancing Genomic Nursing Science Workshop


  • See the RePORT (Research Portfolio Online Reporting Tools) website for access to a variety of reporting tools, reports, data, and analyses of NIH research activities. Use the NIH RePORTER (RePORT Expenditures and Results) module on the RePORT site to search a repository of NIH-funded research projects and access publications and patents resulting from NIH funding

National Human Genomic Research Institute Talking Glossary

Advisory Group/Working Group Members

Common Data Elements Work Group

  • Members

    • Patricia Dennehy, DNP, RN
    • Kathleen Hickey, EdD, RN, FNP, ANP, APNG
    • Debra E. Lyon, PhD, RN, FNP-BC, FAAN
    • Janet K. Williams, PhD, RN, FAAN
  • NIH Coordinator

    • Ann Cashion, PhD, RN, FAAN (co-chair)

Education, Training, and Career Development Mechanisms and Core Elements for Genomic Nurse Scientists Work Group

  • Members

    • Bernice Coleman, PhD, ACNP-BC, FAHA, FAAN
    • Sandra Daack-Hirsch, PhD, RN
    • Mary Engler, PhD, MS, RN
    • Mary Regan, PhD, RN (co-chair)
  • NIH Coordinator

    • Kathleen Calzone, PhD, RN, AGN-BC, FAAN (co-chair)

Enhancing Research Collaborations Work Group

  • Members

    • Yvette Conley, PhD (co-chair)
    • Susan G. Dorsey, PhD, RN, FAAN (co-chair)
    • Jennifer R. Dungan, PhD, RN
    • Margaret Heitkemper PhD, RN, FAAN
    • Ada Sue Hinshaw, PhD, RN, FAAN
    • Angela Starkweather, PhD, ACNP-BC, CNRN, FAAN
    • Jacquelyn Taylor, PhD, RN, PNP-BC, FAHA, FAAN
  • NIH Coordinator

    • Lois Tully PhD (co-chair)

Project Coordinator

    • Jean Jenkins PhD, RN, FAAN