Genomic Contextualism: Shifting the Rhetoric of Genetic Exceptionalism

Am J Bioeth. 2019 Jan;19(1):51-63. doi: 10.1080/15265161.2018.1544304.


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.

Keywords: bioethics; genetic exceptionalism; genomic contextualism; stasis theory.

MeSH terms

  • Genetic Privacy / ethics
  • Genetic Testing / ethics*
  • Genomics / ethics*
  • Health Policy / legislation & jurisprudence*
  • Humans
  • Information Dissemination / ethics*
  • Information Dissemination / legislation & jurisprudence
  • Medical Records Systems, Computerized / standards
  • Policy Making
  • Precision Medicine
  • United States