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Article
What Results Should Be Returned from Opportunistic Screening in Translational Research?
Journal of Personalized Medicine
  • Colin M.E. Halverson, Indiana Univ. School of Medicine
  • Sarah H. Jones, Vanderbilt Univ. Medical Center
  • Laurie Novak, Vanderbilt Univ. Medical Center
  • Christopher Simpson, Vanderbilt Univ. Medical Center
  • Digna R. Velez Edwards, Vanderbilt Univ. Medical Center
  • Sifang K. Zhao, Vanderbilt Univ. Medical Center
  • Ellen W. Clayton, Vanderbilt Law School / Vanderbilt Univ. Medical Center
Document Type
Article
Publication Date
3-1-2020
Keywords
  • clinical genetics,
  • malpractice,
  • healthcare provider,
  • next generation sequencing
Disciplines
Abstract

Increasingly, patients without clinical indications are undergoing genomic tests. The purpose of this study was to assess their appreciation and comprehension of their test results and their clinicians’ reactions. We conducted 675 surveys with participants from the Vanderbilt Electronic Medical Records and Genomics (eMERGE) cohort. We interviewed 36 participants: 19 had received positive results, and 17 were self-identified racial minorities. Eleven clinicians who had patients who had participated in eMERGE were interviewed. A further 21 of these clinicians completed surveys. Participants spontaneously admitted to understanding little or none of the information returned to them from the eMERGE study. However, they simultaneously said that they generally found testing to be “helpful,” even when it did not inform their health care. Primary care physicians expressed discomfort in being asked to interpret the results for their patients and described it as an undue burden. Providing genetic testing to otherwise healthy patients raises a number of ethical issues that warrant serious consideration. Although our participants were enthusiastic about enrolling and receiving their results, they express a limited understanding of what the results mean for their health care. This fact, coupled the clinicians’ concern, urges greater caution when educating and enrolling participants in clinically non-indicated testing.

Citation Information
Colin M.E. Halverson, Sarah H. Jones, Laurie Novak, Christopher Simpson, et al.. "What Results Should Be Returned from Opportunistic Screening in Translational Research?" Journal of Personalized Medicine Vol. 10 (2020) p. 13 ISSN: 2075-4426
Available at: http://works.bepress.com/ellen-clayton/25/