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Perceptions of best practices for return of results in an international survey of psychiatric genetics researchers

Many research sponsors and genetic researchers agree that some medically relevant genetic findings should be offered to participants. The scarcity of research specific to returning genetic results related to psychiatric disorders hinders the ability to develop ethically justified and empirically inf...

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Autores principales: Lázaro-Muñoz, Gabriel, Torgerson, Laura, Smith, Hadley Stevens, Pereira, Stacey
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer International Publishing 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7532738/
https://www.ncbi.nlm.nih.gov/pubmed/33011736
http://dx.doi.org/10.1038/s41431-020-00738-0
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author Lázaro-Muñoz, Gabriel
Torgerson, Laura
Smith, Hadley Stevens
Pereira, Stacey
author_facet Lázaro-Muñoz, Gabriel
Torgerson, Laura
Smith, Hadley Stevens
Pereira, Stacey
author_sort Lázaro-Muñoz, Gabriel
collection PubMed
description Many research sponsors and genetic researchers agree that some medically relevant genetic findings should be offered to participants. The scarcity of research specific to returning genetic results related to psychiatric disorders hinders the ability to develop ethically justified and empirically informed guidelines for responsible return of results for these conditions. We surveyed 407 psychiatric genetics researchers from 39 countries to examine their perceptions of challenges to returning individual results and views about best practices for the process of offering and returning results. Most researchers believed that disclosure of results should be delayed if a patient-participant is experiencing significant psychiatric symptoms. Respondents felt that there is little research on the impact of returning results to participants with psychiatric disorders and agreed that return of psychiatric genetics results to patient-participants may lead to discrimination by insurance companies or other third parties. Almost half of researchers believed results should be returned through a participant’s treating psychiatrist, but many felt that clinicians lack knowledge about how to manage genetic research results. Most researchers thought results should be disclosed by genetic counselors or medical geneticists and in person; however, almost half also supported disclosure via telemedicine. This is the first global survey to examine the perspectives of researchers with experience working with this patient population and with these conditions. Their perspectives can help inform the development of much-needed guidelines to promote responsible return of results related to psychiatric conditions to patients with psychiatric disorders.
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spelling pubmed-75327382020-10-05 Perceptions of best practices for return of results in an international survey of psychiatric genetics researchers Lázaro-Muñoz, Gabriel Torgerson, Laura Smith, Hadley Stevens Pereira, Stacey Eur J Hum Genet Article Many research sponsors and genetic researchers agree that some medically relevant genetic findings should be offered to participants. The scarcity of research specific to returning genetic results related to psychiatric disorders hinders the ability to develop ethically justified and empirically informed guidelines for responsible return of results for these conditions. We surveyed 407 psychiatric genetics researchers from 39 countries to examine their perceptions of challenges to returning individual results and views about best practices for the process of offering and returning results. Most researchers believed that disclosure of results should be delayed if a patient-participant is experiencing significant psychiatric symptoms. Respondents felt that there is little research on the impact of returning results to participants with psychiatric disorders and agreed that return of psychiatric genetics results to patient-participants may lead to discrimination by insurance companies or other third parties. Almost half of researchers believed results should be returned through a participant’s treating psychiatrist, but many felt that clinicians lack knowledge about how to manage genetic research results. Most researchers thought results should be disclosed by genetic counselors or medical geneticists and in person; however, almost half also supported disclosure via telemedicine. This is the first global survey to examine the perspectives of researchers with experience working with this patient population and with these conditions. Their perspectives can help inform the development of much-needed guidelines to promote responsible return of results related to psychiatric conditions to patients with psychiatric disorders. Springer International Publishing 2020-10-03 2021-02 /pmc/articles/PMC7532738/ /pubmed/33011736 http://dx.doi.org/10.1038/s41431-020-00738-0 Text en © The Author(s), under exclusive licence to European Society of Human Genetics 2020
spellingShingle Article
Lázaro-Muñoz, Gabriel
Torgerson, Laura
Smith, Hadley Stevens
Pereira, Stacey
Perceptions of best practices for return of results in an international survey of psychiatric genetics researchers
title Perceptions of best practices for return of results in an international survey of psychiatric genetics researchers
title_full Perceptions of best practices for return of results in an international survey of psychiatric genetics researchers
title_fullStr Perceptions of best practices for return of results in an international survey of psychiatric genetics researchers
title_full_unstemmed Perceptions of best practices for return of results in an international survey of psychiatric genetics researchers
title_short Perceptions of best practices for return of results in an international survey of psychiatric genetics researchers
title_sort perceptions of best practices for return of results in an international survey of psychiatric genetics researchers
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7532738/
https://www.ncbi.nlm.nih.gov/pubmed/33011736
http://dx.doi.org/10.1038/s41431-020-00738-0
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