Innovations in United States genetics nursing: Practice and research

Authors

  • Dale H. LEA,

    Corresponding author
    1. National Institutes of Health, National Human Genome Research Institute, Education and Community Involvement Branch, Bethesda, Maryland,
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  • Judith A. COOKSEY,

    1. Genetic Health Services Research Center, University of Maryland School of Medicine, Department of Epidemiology and Preventive Medicine, Baltimore, Maryland,
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  • Patricia A. FLANAGAN,

    1. Genetic Health Services Research Center, University of Maryland School of Medicine, Department of Epidemiology and Preventive Medicine, Baltimore, Maryland,
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  • Janet K. WILLIAMS,

    1. The University of Iowa, Iowa City, Iowa and
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  • Gaetano FORTE

    1. Center for Health Workforce Studies, University of Albany, The State University of New York, School of Public Health, Albany, New York, USA
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Dale Halsey Lea, National Human Genome Research Institute, Education and Community Involvement Branch, Building 2, Room 4W07, 0249, 2 Center Drive, Bethesda, MD 20892-0249, USA. Email: lead@mail.nih.gov

Abstract

Aim:  Clinical and research applications from human genome discoveries are growing and creating both opportunities and challenges to the integration of genetic concepts into practice and research. Nurses have a long history of caring for individuals, families, and groups with genetic conditions. In the past two decades, a small group of nurses in the USA have used a variety of strategies to further develop the field of genetics nursing. In this paper we identify innovative approaches to identifying genetics-related nursing roles and opportunities, as well as successful collaborative efforts beyond nursing to address the emerging health and societal challenges related to human genetics discoveries.

Methods:  The information presented here comes from a variety of sources where the authors or genetics nurses directly participated, including: (i) a systematic literature review of genetics nursing; (ii) a comprehensive research study of models of delivering clinical genetics services and the roles of health professionals; and (iii) participation in numerous national research, planning, programmatic, and advisory groups involved with clinical genetics-related health services, research, education, and public policy.

Results:  Genetics nurses in the US have developed innovative responses to genetics-related challenges within and beyond the profession of nursing. These include: (i) establishing an organization for nurses in genetics and gaining formal recognition of genetics as a specialty of nursing; (ii) defining the scope of genetics nursing practice and developing a new genetics nursing credential; (iii) establishing a multiprofessional genetics education coalition and defining genetic competency for health-care practice; (iv) creating new clinical practice roles for nurses that integrate emerging genetics concepts and skills into diverse clinical practice areas; (v) expanding nursing involvement in genetics-related research; and (vi) participation in high-level genetics advisory groups.

Conclusions:  The US experience shows that nurses have made substantial progress in expanding their involvement in genetic services through visionary leadership, innovative approaches to challenges, establishing support with nurse colleagues, and engaging in multiprofessional efforts. The most important first step is developing a supportive environment for nurse advancement. In the US, the genetics nurses’ organization known as the International Society of Nurses in Genetics (ISONG) has provided this base.

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