Genomic Contextualism: Shifting the Rhetoric of Genetic Exceptionalism

As genomic science has evolved, so have policy and practice debates about how to describe and evaluate the ways in which genomic information is treated for individuals, institutions, and society. The term genetic exceptionalism, describing the concept that genetic information is special or unique, a...

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Bibliographic Details
Published in:American journal of bioethics 2019-01, Vol.19 (1), p.51-63
Main Authors: Garrison, Nanibaa' A., Brothers, Kyle B., Goldenberg, Aaron J., Lynch, John A.
Format: Article
Language:English
Subjects:
bioethics
genetic exceptionalism
Genetic Privacy - ethics
Genetic Testing - ethics
genomic contextualism
Genomics - ethics
Health Policy - legislation & jurisprudence
Humans
Information Dissemination - ethics
Information Dissemination - legislation & jurisprudence
Medical Records Systems, Computerized - standards
Policy Making
Precision Medicine
stasis theory
United States
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Summary:As genomic science has evolved, so have policy and practice debates about how to describe and evaluate the ways in which genomic information is treated for individuals, institutions, and society. The term genetic exceptionalism, describing the concept that genetic information is special or unique, and specifically different from other kinds of medical information, has been utilized widely, but often counterproductively in these debates. We offer genomic contextualism as a new term to frame the characteristics of genomic science in the debates. Using stasis theory to draw out the important connection between definitional issues and resulting policies, we argue that the framework of genomic contextualism is better suited to evaluating genomics and its policy-relevant features to arrive at more productive discussion and resolve policy debates.
ISSN:1526-5161
1536-0075
DOI:10.1080/15265161.2018.1544304