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What Results Should Be Returned From Opportunistic Screening In Translational Research?, Colin M.E. Halverson, Sarah H. Jones, Laurie Novak, Christopher Simpson, Digna R. Velez Edwards, Sifang K. Zhao, Ellen W. Clayton
What Results Should Be Returned From Opportunistic Screening In Translational Research?, Colin M.E. Halverson, Sarah H. Jones, Laurie Novak, Christopher Simpson, Digna R. Velez Edwards, Sifang K. Zhao, Ellen W. Clayton
Vanderbilt Law School Faculty Publications
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 …