Incoming Nursing Excellence

Ethical, Legal, and Social Issues in the Translation of Genomics Into Health Care

1. Laurie Badzek LLM, JD, MS, RN, FAAN¹,
2. Mark Henaghan LLB², 
3. Martha Turner PhD, RN³, 
4. Rita Monsen DSN, MPH, RN, FAAN⁴

Article first published online: 31 JAN 2013

DOI: 10.1111/jnu.12000

© 2013 Sigma Theta Tau International

Issue

Journal of Nursing Scholarship

Volume 45, Issue 1, pages 15–24, March 2013

Abstract

Purpose: The rapid continuous feed of new information from scientific discoveries related to the human genome makes translation and incorporation of information into the clinical setting difficult and creates ethical, legal, and social challenges for providers. This article overviews some of the legal and ethical foundations that guide our response to current complex issues in health care associated with the impact of scientific discoveries related to the human genome.

Organizing Construct: Overlapping ethical, legal, and social implications impact nurses and other healthcare professionals as they seek to identify and translate into practice important information related to new genomic scientific knowledge.

Methods: Ethical and legal foundations such as professional codes, human dignity, and human rights provide the framework for understanding highly complex genomic issues. Ethical, legal, and social concerns of the health provider in the translation of genomic knowledge into practice including minimizing harms, maximizing benefits, transparency, confidentiality, and informed consent are described. Additionally, nursing professional competencies related to ethical, legal, and social issues in the translation of genomics into health care are discussed.

Conclusions: Ethical, legal, and social considerations in new genomic discovery necessitate that healthcare professionals have knowledge and competence to respond to complex genomic issues and provide appropriate information and care to patients, families, and communities.

Clinical Relevance: Understanding the ethical, legal, and social issues in the translation of genomic information into practice is essential to provide patients, families, and communities with competent, safe, effective health care.

Ethical and legal foundations provide a framework for understanding the appropriate incorporation of genomic information and its translation into healthcare practice. A description of the ethical, legal, and social concerns as they relate to healthcare provider obligations, legal and ethical concepts, including confidentiality, informed consent, the duty to warn, access, and genetic testing, are topics presented. Healthcare providers, including nurses, have a social and professional responsibility to ensure fairness and equity to patients, families, and communities amid rapidly developing technology.

The need for health provider education and competency has been established. Competencies related to ethical, legal, and social issues have been developed in the United States, United Kingdom, and other countries worldwide (Jenkins & Calzone, 2007; Kirk, Calzone, Arimori, & Tonkin, 2011). Despite accepted and approved competencies, education and resources are still in their development and are challenged by the continuous stream of new genomic information, some of which is not yet fully applicable to clinical practice (Tonkin, Calzone, Jenkins, Lea, & Prows, 2011).

LINK TO onlinelibrary.wiley.com/full