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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

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



  • 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