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Stakeholders in psychiatry and their attitudes toward receiving pertinent and incident findings in genomic research

Increasingly more psychiatric research studies use whole genome sequencing or whole exome sequencing. Consequently, researchers face difficult questions, such as which genomic findings to return to research participants and how. This study aims to gain more knowledge on the attitudes among potential...

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Autores principales: Sundby, Anna, Boolsen, Merete W., Burgdorf, Kristoffer S., Ullum, Henrik, Hansen, Thomas F., Middleton, Anna, Mors, Ole
Formato: Online Artículo Texto
Lenguaje:English
Publicado: John Wiley and Sons Inc. 2017
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5637903/
https://www.ncbi.nlm.nih.gov/pubmed/28817238
http://dx.doi.org/10.1002/ajmg.a.38380
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author Sundby, Anna
Boolsen, Merete W.
Burgdorf, Kristoffer S.
Ullum, Henrik
Hansen, Thomas F.
Middleton, Anna
Mors, Ole
author_facet Sundby, Anna
Boolsen, Merete W.
Burgdorf, Kristoffer S.
Ullum, Henrik
Hansen, Thomas F.
Middleton, Anna
Mors, Ole
author_sort Sundby, Anna
collection PubMed
description Increasingly more psychiatric research studies use whole genome sequencing or whole exome sequencing. Consequently, researchers face difficult questions, such as which genomic findings to return to research participants and how. This study aims to gain more knowledge on the attitudes among potential research participants and health professionals toward receiving pertinent and incidental findings. A cross‐sectional online survey was developed to investigate the attitudes among research participants toward receiving genomic findings. A total of 2,637 stakeholders responded: 241 persons with mental disorders, 671 relatives, 1,623 blood donors, 74 psychiatrists, and 28 clinical geneticists. Stakeholders wanted both pertinent findings (95%) and incidental findings (91%) to be made available for research participants. The majority (77%) stated that researchers should not actively search for incidental findings. Persons with mental disorders and relatives were generally more positive about receiving any kind of findings than clinical geneticists and psychiatrists. Compared with blood donors, persons with mental disorders reported to be more positive about receiving raw genomic data and information that is not of serious health importance. Psychiatrists and clinical geneticists were less positive about receiving genomic findings compared with blood donors. The attitudes toward receiving findings were very positive. Stakeholders were willing to refrain from receiving incidental information if it could compromise the research. Our results suggest that research participants consider themselves as altruistic participants. This study offers valuable insight, which may inform future programs aiming to develop new strategies to target issues relating to the return of findings in genomic research.
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spelling pubmed-56379032017-10-25 Stakeholders in psychiatry and their attitudes toward receiving pertinent and incident findings in genomic research Sundby, Anna Boolsen, Merete W. Burgdorf, Kristoffer S. Ullum, Henrik Hansen, Thomas F. Middleton, Anna Mors, Ole Am J Med Genet A Original Articles Increasingly more psychiatric research studies use whole genome sequencing or whole exome sequencing. Consequently, researchers face difficult questions, such as which genomic findings to return to research participants and how. This study aims to gain more knowledge on the attitudes among potential research participants and health professionals toward receiving pertinent and incidental findings. A cross‐sectional online survey was developed to investigate the attitudes among research participants toward receiving genomic findings. A total of 2,637 stakeholders responded: 241 persons with mental disorders, 671 relatives, 1,623 blood donors, 74 psychiatrists, and 28 clinical geneticists. Stakeholders wanted both pertinent findings (95%) and incidental findings (91%) to be made available for research participants. The majority (77%) stated that researchers should not actively search for incidental findings. Persons with mental disorders and relatives were generally more positive about receiving any kind of findings than clinical geneticists and psychiatrists. Compared with blood donors, persons with mental disorders reported to be more positive about receiving raw genomic data and information that is not of serious health importance. Psychiatrists and clinical geneticists were less positive about receiving genomic findings compared with blood donors. The attitudes toward receiving findings were very positive. Stakeholders were willing to refrain from receiving incidental information if it could compromise the research. Our results suggest that research participants consider themselves as altruistic participants. This study offers valuable insight, which may inform future programs aiming to develop new strategies to target issues relating to the return of findings in genomic research. John Wiley and Sons Inc. 2017-08-17 2017-10 /pmc/articles/PMC5637903/ /pubmed/28817238 http://dx.doi.org/10.1002/ajmg.a.38380 Text en © 2017 The Authors. American Journal of Medical Genetics Part A Published by Wiley Periodicals, Inc. This is an open access article under the terms of the Creative Commons Attribution‐NonCommercial (http://creativecommons.org/licenses/by-nc/4.0/) License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes.
spellingShingle Original Articles
Sundby, Anna
Boolsen, Merete W.
Burgdorf, Kristoffer S.
Ullum, Henrik
Hansen, Thomas F.
Middleton, Anna
Mors, Ole
Stakeholders in psychiatry and their attitudes toward receiving pertinent and incident findings in genomic research
title Stakeholders in psychiatry and their attitudes toward receiving pertinent and incident findings in genomic research
title_full Stakeholders in psychiatry and their attitudes toward receiving pertinent and incident findings in genomic research
title_fullStr Stakeholders in psychiatry and their attitudes toward receiving pertinent and incident findings in genomic research
title_full_unstemmed Stakeholders in psychiatry and their attitudes toward receiving pertinent and incident findings in genomic research
title_short Stakeholders in psychiatry and their attitudes toward receiving pertinent and incident findings in genomic research
title_sort stakeholders in psychiatry and their attitudes toward receiving pertinent and incident findings in genomic research
topic Original Articles
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5637903/
https://www.ncbi.nlm.nih.gov/pubmed/28817238
http://dx.doi.org/10.1002/ajmg.a.38380
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