Ethics, Policy, and Educational Issues in Genetic Testing

Authors

  • Janet K. Williams,

    1. Janet K. Williams, RN, PhD, PNP, CGC, FAAN, Gamma, Kelting Professor of Nursing, The University of Iowa, Iowa City, IA; Heather Skirton, RGN, MSc, PhD, Registered Genetic Counsellor (UK), Gamma, Reader in Health Genetics, University of Plymouth, Plymouth, UK; Agnes Masny, RN, MPH, MSN, CRNP, Kappa Chi, Nurse Practitioner/Research Associate, Fox Chase Cancer Center, Philadelphia, PA. Correspondence to Dr. Williams, 338 Nursing Building, The University of Iowa, Iowa City, IA 52242. E-mail: janet-williams@uiowa.edu
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  • Heather Skirton,

    1. Janet K. Williams, RN, PhD, PNP, CGC, FAAN, Gamma, Kelting Professor of Nursing, The University of Iowa, Iowa City, IA; Heather Skirton, RGN, MSc, PhD, Registered Genetic Counsellor (UK), Gamma, Reader in Health Genetics, University of Plymouth, Plymouth, UK; Agnes Masny, RN, MPH, MSN, CRNP, Kappa Chi, Nurse Practitioner/Research Associate, Fox Chase Cancer Center, Philadelphia, PA. Correspondence to Dr. Williams, 338 Nursing Building, The University of Iowa, Iowa City, IA 52242. E-mail: janet-williams@uiowa.edu
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  • Agnes Masny

    1. Janet K. Williams, RN, PhD, PNP, CGC, FAAN, Gamma, Kelting Professor of Nursing, The University of Iowa, Iowa City, IA; Heather Skirton, RGN, MSc, PhD, Registered Genetic Counsellor (UK), Gamma, Reader in Health Genetics, University of Plymouth, Plymouth, UK; Agnes Masny, RN, MPH, MSN, CRNP, Kappa Chi, Nurse Practitioner/Research Associate, Fox Chase Cancer Center, Philadelphia, PA. Correspondence to Dr. Williams, 338 Nursing Building, The University of Iowa, Iowa City, IA 52242. E-mail: janet-williams@uiowa.edu
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Abstract

Purpose: Analyze ethics, public policy, and education issues that arise in the United States (US) and the United Kingdom (UK) when genomic information acquired as a result of genetic testing is introduced into healthcare services.

Organizing Construct: Priorities in the Ethical, Legal, and Social Issues Research Program include privacy, integration of genetic services into clinical health care, and educational preparation of the nursing workforce. These constructs are used to examine health policies in the US and UK, and professional interactions of individuals and families with healthcare providers.

Findings: Individual, family, and societal goals may conflict with current healthcare practices and policies when genetic testing is done. Current health policies do not fully address these concerns. Unresolved issues include protection of privacy of individuals while considering genetic information needs of family members, determination of appropriate monitoring of genetic tests, addressing genetic healthcare discrepancies, and assuring appropriate nursing workforce preparation.

Conclusions: Introduction of genetic testing into health care requires that providers are knowledgeable regarding ethical, policy, and practice issues in order to minimize risk for harm, protect the rights of individuals and families, and consider societal context in the management of genetic test results. Understanding of these issues is a component of genetic nursing competency that must be addressed at all levels of nursing education.

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