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Improved Ethical Guidance for the Return of Results from Psychiatric Genomics Research

There is an emerging consensus that genomic researchers should, at a minimum, offer to return to individual participants clinically valid, medically important, and medically actionable genomic findings (e.g., pathogenic variants in BRCA1) identified in the course of research. However, this is not a...

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Autores principales: Lázaro-Muñoz, Gabriel, Farrell, Martilias S, Crowley, James J, Filmyer, Dawn M, Shaughnessy, Rita A, Josiassen, Richard C, Sullivan, Patrick F
Formato: Online Artículo Texto
Lenguaje:English
Publicado: 2017
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5752587/
https://www.ncbi.nlm.nih.gov/pubmed/29158581
http://dx.doi.org/10.1038/mp.2017.228
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author Lázaro-Muñoz, Gabriel
Farrell, Martilias S
Crowley, James J
Filmyer, Dawn M
Shaughnessy, Rita A
Josiassen, Richard C
Sullivan, Patrick F
author_facet Lázaro-Muñoz, Gabriel
Farrell, Martilias S
Crowley, James J
Filmyer, Dawn M
Shaughnessy, Rita A
Josiassen, Richard C
Sullivan, Patrick F
author_sort Lázaro-Muñoz, Gabriel
collection PubMed
description There is an emerging consensus that genomic researchers should, at a minimum, offer to return to individual participants clinically valid, medically important, and medically actionable genomic findings (e.g., pathogenic variants in BRCA1) identified in the course of research. However, this is not a common practice in psychiatric genetics research. Furthermore, psychiatry researchers often generate findings that do not meet all of these criteria, yet there may be ethically compelling arguments to offer selected results. Here, we review the return of results debate in genomics research and propose that, as for genomic studies of other medical conditions, psychiatric genomics researchers should offer findings that meet the minimum criteria stated above. Additionally, if resources allow, psychiatry researchers could consider offering to return pre-specified “clinically valuable” findings even if not medically actionable – for instance, findings that help corroborate a psychiatric diagnosis, and findings that indicate important health risks. Similarly, we propose offering “likely clinically valuable” findings, specifically, variants of uncertain significance potentially related to a participant’s symptoms. The goal of this Perspective is to initiate a discussion that can help identify optimal ways of managing the return of results from psychiatric genomics research.
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spelling pubmed-57525872018-05-21 Improved Ethical Guidance for the Return of Results from Psychiatric Genomics Research Lázaro-Muñoz, Gabriel Farrell, Martilias S Crowley, James J Filmyer, Dawn M Shaughnessy, Rita A Josiassen, Richard C Sullivan, Patrick F Mol Psychiatry Article There is an emerging consensus that genomic researchers should, at a minimum, offer to return to individual participants clinically valid, medically important, and medically actionable genomic findings (e.g., pathogenic variants in BRCA1) identified in the course of research. However, this is not a common practice in psychiatric genetics research. Furthermore, psychiatry researchers often generate findings that do not meet all of these criteria, yet there may be ethically compelling arguments to offer selected results. Here, we review the return of results debate in genomics research and propose that, as for genomic studies of other medical conditions, psychiatric genomics researchers should offer findings that meet the minimum criteria stated above. Additionally, if resources allow, psychiatry researchers could consider offering to return pre-specified “clinically valuable” findings even if not medically actionable – for instance, findings that help corroborate a psychiatric diagnosis, and findings that indicate important health risks. Similarly, we propose offering “likely clinically valuable” findings, specifically, variants of uncertain significance potentially related to a participant’s symptoms. The goal of this Perspective is to initiate a discussion that can help identify optimal ways of managing the return of results from psychiatric genomics research. 2017-11-21 2018-01 /pmc/articles/PMC5752587/ /pubmed/29158581 http://dx.doi.org/10.1038/mp.2017.228 Text en 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
Lázaro-Muñoz, Gabriel
Farrell, Martilias S
Crowley, James J
Filmyer, Dawn M
Shaughnessy, Rita A
Josiassen, Richard C
Sullivan, Patrick F
Improved Ethical Guidance for the Return of Results from Psychiatric Genomics Research
title Improved Ethical Guidance for the Return of Results from Psychiatric Genomics Research
title_full Improved Ethical Guidance for the Return of Results from Psychiatric Genomics Research
title_fullStr Improved Ethical Guidance for the Return of Results from Psychiatric Genomics Research
title_full_unstemmed Improved Ethical Guidance for the Return of Results from Psychiatric Genomics Research
title_short Improved Ethical Guidance for the Return of Results from Psychiatric Genomics Research
title_sort improved ethical guidance for the return of results from psychiatric genomics research
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5752587/
https://www.ncbi.nlm.nih.gov/pubmed/29158581
http://dx.doi.org/10.1038/mp.2017.228
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