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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...
Autores principales: | , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Springer International Publishing
2020
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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. |
format | Online Article Text |
id | pubmed-7532738 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2020 |
publisher | Springer International Publishing |
record_format | MEDLINE/PubMed |
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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