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Is Incidental Finding the Best Term? A Study of Patients’ Preferences
PURPOSE: There is debate within the genetics community about the optimal term to describe genetic variants unrelated to the test indication, but potentially important for health. Given the lack of consensus and the importance of adopting terminology that promotes effective clinical communication, we...
Autores principales: | , , , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
2016
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5291803/ https://www.ncbi.nlm.nih.gov/pubmed/27490114 http://dx.doi.org/10.1038/gim.2016.96 |
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author | Tan, Nina Amendola, Laura M O’Daniel, Julianne M. Burt, Amber Horike-Pyne, Martha J. Boshe, Lacey Henderson, Gail E. Rini, Christine Roche M.S., Myra I. Hisama, Fuki M. Burke, Wylie Wilfond, Benjamin Jarvik, Gail P. |
author_facet | Tan, Nina Amendola, Laura M O’Daniel, Julianne M. Burt, Amber Horike-Pyne, Martha J. Boshe, Lacey Henderson, Gail E. Rini, Christine Roche M.S., Myra I. Hisama, Fuki M. Burke, Wylie Wilfond, Benjamin Jarvik, Gail P. |
author_sort | Tan, Nina |
collection | PubMed |
description | PURPOSE: There is debate within the genetics community about the optimal term to describe genetic variants unrelated to the test indication, but potentially important for health. Given the lack of consensus and the importance of adopting terminology that promotes effective clinical communication, we sought the opinion of clinical genetics patients. METHODS: Surveys and focus groups with two patient populations were conducted. Eighty-eight survey participants were asked to rank four terms according to how well each describes results unrelated to the test indication: incidental findings, secondary findings, additional findings, and ancillary findings. Participants in six focus groups were guided through a free-thought exercise to describe desired attributes of such a term, and then asked to formulate a best term to represent this concept. RESULTS: The term additional findings had the most first choice rankings by survey participants, followed by secondary findings, incidental findings, and ancillary findings. Most focus group participants preferred the term additional findings; they also described reasons why other terms were not optimal. CONCLUSION: Additional findings was preferred as both more neutral and accessible than other terms currently in use. Patient perceptions and comprehension will be framed by the terminology. Thus, patient opinions should be considered by medical genetics professionals. |
format | Online Article Text |
id | pubmed-5291803 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2016 |
record_format | MEDLINE/PubMed |
spelling | pubmed-52918032017-02-06 Is Incidental Finding the Best Term? A Study of Patients’ Preferences Tan, Nina Amendola, Laura M O’Daniel, Julianne M. Burt, Amber Horike-Pyne, Martha J. Boshe, Lacey Henderson, Gail E. Rini, Christine Roche M.S., Myra I. Hisama, Fuki M. Burke, Wylie Wilfond, Benjamin Jarvik, Gail P. Genet Med Article PURPOSE: There is debate within the genetics community about the optimal term to describe genetic variants unrelated to the test indication, but potentially important for health. Given the lack of consensus and the importance of adopting terminology that promotes effective clinical communication, we sought the opinion of clinical genetics patients. METHODS: Surveys and focus groups with two patient populations were conducted. Eighty-eight survey participants were asked to rank four terms according to how well each describes results unrelated to the test indication: incidental findings, secondary findings, additional findings, and ancillary findings. Participants in six focus groups were guided through a free-thought exercise to describe desired attributes of such a term, and then asked to formulate a best term to represent this concept. RESULTS: The term additional findings had the most first choice rankings by survey participants, followed by secondary findings, incidental findings, and ancillary findings. Most focus group participants preferred the term additional findings; they also described reasons why other terms were not optimal. CONCLUSION: Additional findings was preferred as both more neutral and accessible than other terms currently in use. Patient perceptions and comprehension will be framed by the terminology. Thus, patient opinions should be considered by medical genetics professionals. 2016-08-04 2017-02 /pmc/articles/PMC5291803/ /pubmed/27490114 http://dx.doi.org/10.1038/gim.2016.96 Text en http://www.nature.com/authors/editorial_policies/license.html#terms Users may view, print, copy, and download text and data-mine the content in such documents, for the purposes of academic research, subject always to the full Conditions of use:http://www.nature.com/authors/editorial_policies/license.html#terms |
spellingShingle | Article Tan, Nina Amendola, Laura M O’Daniel, Julianne M. Burt, Amber Horike-Pyne, Martha J. Boshe, Lacey Henderson, Gail E. Rini, Christine Roche M.S., Myra I. Hisama, Fuki M. Burke, Wylie Wilfond, Benjamin Jarvik, Gail P. Is Incidental Finding the Best Term? A Study of Patients’ Preferences |
title | Is Incidental Finding the Best Term? A Study of Patients’ Preferences |
title_full | Is Incidental Finding the Best Term? A Study of Patients’ Preferences |
title_fullStr | Is Incidental Finding the Best Term? A Study of Patients’ Preferences |
title_full_unstemmed | Is Incidental Finding the Best Term? A Study of Patients’ Preferences |
title_short | Is Incidental Finding the Best Term? A Study of Patients’ Preferences |
title_sort | is incidental finding the best term? a study of patients’ preferences |
topic | Article |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5291803/ https://www.ncbi.nlm.nih.gov/pubmed/27490114 http://dx.doi.org/10.1038/gim.2016.96 |
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