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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...
Autores principales: | , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Elsevier
2015
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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. |
format | Online Article Text |
id | pubmed-4745397 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2015 |
publisher | Elsevier |
record_format | MEDLINE/PubMed |
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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