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Open AccessArticle

What Results Should Be Returned from Opportunistic Screening in Translational Research?

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Center for Bioethics, Indiana University School of Medicine, Indianapolis, IN 46202, USA
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Regenstrief Institute, Indianapolis, IN 46202, USA
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Vanderbilt Epidemiology Center, Vanderbilt University Medical Center, Nashville, TN 37235, USA
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Department of Biomedical Informatics, Vanderbilt University Medical Center, Nashville, TN 37235, USA
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Institute for Medicine and Public Health, Vanderbilt University Medical Center, Nashville, TN 37235, USA
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Vanderbilt Genetics Institute, Vanderbilt University Medical Center, Nashville, TN 37235, USA
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Division of Quantitative Sciences, Vanderbilt University Medical Center, Nashville, TN 37235, USA
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Department of Obstetrics and Gynecology, Vanderbilt University Medical Center, Nashville, TN 37235, USA
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Center for Biomedical Ethics and Society, Vanderbilt University Medical Center, Nashville, TN 37235, USA
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Department of Pediatrics, Vanderbilt University Medical Center, Nashville, TN 37235, USA
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School of Law, Vanderbilt University, Nashville, TN 37235, USA
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Author to whom correspondence should be addressed.
J. Pers. Med. 2020, 10(1), 13; https://doi.org/10.3390/jpm10010013
Received: 27 January 2020 / Revised: 16 February 2020 / Accepted: 18 February 2020 / Published: 1 March 2020
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. View Full-Text
Keywords: clinical utility; personal utility; genetic testing; genomic testing; return of results clinical utility; personal utility; genetic testing; genomic testing; return of results
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Halverson, C.M.E.; Jones, S.H.; Novak, L.; Simpson, C.; Edwards, D.R.V.; Zhao, S.K.; Clayton, E.W. What Results Should Be Returned from Opportunistic Screening in Translational Research? J. Pers. Med. 2020, 10, 13.

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