ACCESS: an empirically-based framework developed by the International Nursing CASCADE Consortium to address genomic disparities through the nursing workforce

Maria C Katapodi; Carla Pedrazzani; Sivia Barnoy; Efrat Dagan; Muriel Fluri; Tarsha Jones; Sue Kim; Meghan L Underhill-Blazey; Melissa K Uveges; Andrew A Dwyer

doi:10.3389/fgene.2023.1337366

ACCESS: an empirically-based framework developed by the International Nursing CASCADE Consortium to address genomic disparities through the nursing workforce

Front Genet. 2024 Jan 8:14:1337366. doi: 10.3389/fgene.2023.1337366. eCollection 2023.

Authors

Maria C Katapodi^{1

2}, Carla Pedrazzani^{1

3}, Sivia Barnoy^{1

4}, Efrat Dagan^{1

5}, Muriel Fluri^{1

6}, Tarsha Jones^{1

7}, Sue Kim^{1

8}, Meghan L Underhill-Blazey^{1

9}, Melissa K Uveges^{1

10}, Andrew A Dwyer^{1

10

11}

Affiliations

¹ International Nursing CASCADE Consortium, Basel, Switzerland.
² Department of Clinical Research, University of Basel, Basel, Switzerland.
³ Department of Business Economics, Health and Social Care, University of Applied Sciences and Arts of Southern Switzerland, Manno, Switzerland.
⁴ Nursing Department, Tel-Aviv University, Tel Aviv, Israel.
⁵ The Cheryl Spencer Department of Nursing, University of Haifa, Haifa, Israel.
⁶ Inselspital, Bern University Hospital, Bern, Switzerland.
⁷ Christine E. Lynn College of Nursing, Florida Atlantic University, Boca Raton, FL, United States.
⁸ College of Nursing, Yonsei University, Seoul, Republic of Korea.
⁹ School of Nursing, University of Rochester, Rochester, NY, United States.
¹⁰ William F. Connell School of Nursing, Boston College, Boston, MA, United States.
¹¹ Massachusetts General Hospital, Harvard Center for Reproductive Medicine, Boston, MA, United States.

Abstract

Introduction: Efforts are needed across disciplines to close disparities in genomic healthcare. Nurses are the most numerous trained healthcare professionals worldwide and can play a key role in addressing disparities across the continuum of care. ACCESS is an empirically-based theoretical framework to guide clinical practice in order to ameliorate genomic disparities. Methods: The framework was developed by the International Nursing CASCADE Consortium based on evidence collected between 2005 and 2023 from individuals and families of various ethnic backgrounds, with diverse hereditary conditions, and in different healthcare systems, i.e., Israel, Korea, Switzerland, and several U.S. States. The components of the framework were validated against published scientific literature. Results: ACCESS stands for Advocating, Coping, Communication, cascadE Screening, and Surveillance. Each component is demonstrated in concrete examples of clinical practice within the scope of the nursing profession related to genomic healthcare. Key outcomes include advocacy, active coping, intrafamilial communication, cascade screening, and lifelong surveillance. Advocacy entails timely identification of at-risk individuals, facilitating referrals to specialized services, and informed decision-making for testing. Active coping enhances lifelong adaptation and management of disease risk. Effective intrafamilial communication of predisposition to hereditary disease supports cascade testing of unaffected at-risk relatives. Lifelong surveillance is essential for identifying recurrence, changes in health status, and disease trajectory for life-threatening and for life-altering conditions. Discussion: ACCESS provides a standardized, systematic, situational, and unifying guide to practice and is applicable for nursing and for other healthcare professions. When appropriately enacted it will contribute towards equitable access to genomic resources and services.

Keywords: advocacy; cascade genetic testing; family communication and coping; international perspective; interprofessional collaboration; nursing code of ethics; nursing practice; surveillance.

Abstract

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