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

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 Reco...

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Autores principales: Halverson, Colin M. E., Jones, Sarah H., Novak, Laurie, Simpson, Christopher, Edwards, Digna R. Velez, Zhao, Sifang Kathy, Clayton, Ellen W.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7151595/
https://www.ncbi.nlm.nih.gov/pubmed/32121581
http://dx.doi.org/10.3390/jpm10010013
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author Halverson, Colin M. E.
Jones, Sarah H.
Novak, Laurie
Simpson, Christopher
Edwards, Digna R. Velez
Zhao, Sifang Kathy
Clayton, Ellen W.
author_facet Halverson, Colin M. E.
Jones, Sarah H.
Novak, Laurie
Simpson, Christopher
Edwards, Digna R. Velez
Zhao, Sifang Kathy
Clayton, Ellen W.
author_sort Halverson, Colin M. E.
collection PubMed
description 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.
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spelling pubmed-71515952020-04-20 What Results Should Be Returned from Opportunistic Screening in Translational Research? Halverson, Colin M. E. Jones, Sarah H. Novak, Laurie Simpson, Christopher Edwards, Digna R. Velez Zhao, Sifang Kathy Clayton, Ellen W. J Pers Med Article 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. MDPI 2020-03-01 /pmc/articles/PMC7151595/ /pubmed/32121581 http://dx.doi.org/10.3390/jpm10010013 Text en © 2020 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (http://creativecommons.org/licenses/by/4.0/).
spellingShingle Article
Halverson, Colin M. E.
Jones, Sarah H.
Novak, Laurie
Simpson, Christopher
Edwards, Digna R. Velez
Zhao, Sifang Kathy
Clayton, Ellen W.
What Results Should Be Returned from Opportunistic Screening in Translational Research?
title What Results Should Be Returned from Opportunistic Screening in Translational Research?
title_full What Results Should Be Returned from Opportunistic Screening in Translational Research?
title_fullStr What Results Should Be Returned from Opportunistic Screening in Translational Research?
title_full_unstemmed What Results Should Be Returned from Opportunistic Screening in Translational Research?
title_short What Results Should Be Returned from Opportunistic Screening in Translational Research?
title_sort what results should be returned from opportunistic screening in translational research?
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7151595/
https://www.ncbi.nlm.nih.gov/pubmed/32121581
http://dx.doi.org/10.3390/jpm10010013
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