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Patients' views on incidental findings from clinical exome sequencing

This article characterizes the opinions of patients and family members of patients undergoing clinical genomic-based testing regarding the return of incidental findings from these tests. Over sixteen months, we conducted 55 in-depth interviews with individuals to explore their preferences regarding...

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Detalles Bibliográficos
Autores principales: Clift, Kristin E., Halverson, Colin M.E., Fiksdal, Alexander S., Kumbamu, Ashok, Sharp, Richard R., McCormick, Jennifer B.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Elsevier 2015
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4745397/
https://www.ncbi.nlm.nih.gov/pubmed/26937348
http://dx.doi.org/10.1016/j.atg.2015.02.005
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author Clift, Kristin E.
Halverson, Colin M.E.
Fiksdal, Alexander S.
Kumbamu, Ashok
Sharp, Richard R.
McCormick, Jennifer B.
author_facet Clift, Kristin E.
Halverson, Colin M.E.
Fiksdal, Alexander S.
Kumbamu, Ashok
Sharp, Richard R.
McCormick, Jennifer B.
author_sort Clift, Kristin E.
collection PubMed
description This article characterizes the opinions of patients and family members of patients undergoing clinical genomic-based testing regarding the return of incidental findings from these tests. Over sixteen months, we conducted 55 in-depth interviews with individuals to explore their preferences regarding which types of results they would like returned to them. Responses indicate a diversity of attitudes toward the return of incidental findings and a diversity of justifications for those attitudes. The majority of participants also described an imperative to include the patient in deciding which results to return rather than having universal, predetermined rules governing results disclosure. The results demonstrate the importance of a patient centered-approach to returning incidental findings.
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spelling pubmed-47453972016-03-02 Patients' views on incidental findings from clinical exome sequencing Clift, Kristin E. Halverson, Colin M.E. Fiksdal, Alexander S. Kumbamu, Ashok Sharp, Richard R. McCormick, Jennifer B. Appl Transl Genom Special Section — Lifestyle Genomics: Fact, Fiction or Both? with Guest Editors Cristiana Pavlidis and George Patrinos This article characterizes the opinions of patients and family members of patients undergoing clinical genomic-based testing regarding the return of incidental findings from these tests. Over sixteen months, we conducted 55 in-depth interviews with individuals to explore their preferences regarding which types of results they would like returned to them. Responses indicate a diversity of attitudes toward the return of incidental findings and a diversity of justifications for those attitudes. The majority of participants also described an imperative to include the patient in deciding which results to return rather than having universal, predetermined rules governing results disclosure. The results demonstrate the importance of a patient centered-approach to returning incidental findings. Elsevier 2015-02-21 /pmc/articles/PMC4745397/ /pubmed/26937348 http://dx.doi.org/10.1016/j.atg.2015.02.005 Text en © 2015 The Authors http://creativecommons.org/licenses/by-nc-nd/4.0/ This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).
spellingShingle Special Section — Lifestyle Genomics: Fact, Fiction or Both? with Guest Editors Cristiana Pavlidis and George Patrinos
Clift, Kristin E.
Halverson, Colin M.E.
Fiksdal, Alexander S.
Kumbamu, Ashok
Sharp, Richard R.
McCormick, Jennifer B.
Patients' views on incidental findings from clinical exome sequencing
title Patients' views on incidental findings from clinical exome sequencing
title_full Patients' views on incidental findings from clinical exome sequencing
title_fullStr Patients' views on incidental findings from clinical exome sequencing
title_full_unstemmed Patients' views on incidental findings from clinical exome sequencing
title_short Patients' views on incidental findings from clinical exome sequencing
title_sort patients' views on incidental findings from clinical exome sequencing
topic Special Section — Lifestyle Genomics: Fact, Fiction or Both? with Guest Editors Cristiana Pavlidis and George Patrinos
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4745397/
https://www.ncbi.nlm.nih.gov/pubmed/26937348
http://dx.doi.org/10.1016/j.atg.2015.02.005
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