Return of individual research results from genomic research: A systematic review of stakeholder perspectives

Despite the plethora of empirical studies conducted to date, debate continues about whether and to what extent results should be returned to participants of genomic research. We aimed to systematically review the empirical literature exploring stakeholders’ perspectives on return of individual resea...

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Autores principales:	Danya F. Vears, Joel T. Minion, Stephanie J. Roberts, James Cummings, Mavis Machirori, Mwenza Blell, Isabelle Budin-Ljøsne, Lorraine Cowley, Stephanie O. M. Dyke, Clara Gaff, Robert Green, Alison Hall, Amber L. Johns, Bartha M. Knoppers, Stephanie Mulrine, Christine Patch, Eva Winkler, Madeleine J. Murtagh
Formato:	article
Lenguaje:	EN
Publicado:	Public Library of Science (PLoS) 2021
Materias:	Medicine R Science Q
Acceso en línea:	https://doaj.org/article/08013997ec0e494496b417420b999001
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spelling	oai:doaj.org-article:08013997ec0e494496b417420b9990012021-11-18T06:22:37ZReturn of individual research results from genomic research: A systematic review of stakeholder perspectives1932-6203https://doaj.org/article/08013997ec0e494496b417420b9990012021-01-01T00:00:00Zhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC8575249/?tool=EBIhttps://doaj.org/toc/1932-6203Despite the plethora of empirical studies conducted to date, debate continues about whether and to what extent results should be returned to participants of genomic research. We aimed to systematically review the empirical literature exploring stakeholders’ perspectives on return of individual research results (IRR) from genomic research. We examined preferences for receiving or willingness to return IRR, and experiences with either receiving or returning them. The systematic searches were conducted across five major databases in August 2018 and repeated in April 2020, and included studies reporting findings from primary research regardless of method (quantitative, qualitative, mixed). Articles that related to the clinical setting were excluded. Our search identified 221 articles that met our search criteria. This included 118 quantitative, 69 qualitative and 34 mixed methods studies. These articles included a total number of 118,874 stakeholders with research participants (85,270/72%) and members of the general public (40,967/35%) being the largest groups represented. The articles spanned at least 22 different countries with most (144/65%) being from the USA. Most (76%) discussed clinical research projects, rather than biobanks. More than half (58%) gauged views that were hypothetical. We found overwhelming evidence of high interest in return of IRR from potential and actual genomic research participants. There is also a general willingness to provide such results by researchers and health professionals, although they tend to adopt a more cautious stance. While all results are desired to some degree, those that have the potential to change clinical management are generally prioritized by all stakeholders. Professional stakeholders appear more willing to return results that are reliable and clinically relevant than those that are less reliable and lack clinical relevance. The lack of evidence for significant enduring psychological harm and the clear benefits to some research participants suggest that researchers should be returning actionable IRRs to participants.Danya F. VearsJoel T. MinionStephanie J. RobertsJames CummingsMavis MachiroriMwenza BlellIsabelle Budin-LjøsneLorraine CowleyStephanie O. M. DykeClara GaffRobert GreenAlison HallAmber L. JohnsBartha M. KnoppersStephanie MulrineChristine PatchEva WinklerMadeleine J. MurtaghPublic Library of Science (PLoS)articleMedicineRScienceQENPLoS ONE, Vol 16, Iss 11 (2021)
institution	DOAJ
collection	DOAJ
language	EN
topic	Medicine R Science Q
spellingShingle	Medicine R Science Q Danya F. Vears Joel T. Minion Stephanie J. Roberts James Cummings Mavis Machirori Mwenza Blell Isabelle Budin-Ljøsne Lorraine Cowley Stephanie O. M. Dyke Clara Gaff Robert Green Alison Hall Amber L. Johns Bartha M. Knoppers Stephanie Mulrine Christine Patch Eva Winkler Madeleine J. Murtagh Return of individual research results from genomic research: A systematic review of stakeholder perspectives
description	Despite the plethora of empirical studies conducted to date, debate continues about whether and to what extent results should be returned to participants of genomic research. We aimed to systematically review the empirical literature exploring stakeholders’ perspectives on return of individual research results (IRR) from genomic research. We examined preferences for receiving or willingness to return IRR, and experiences with either receiving or returning them. The systematic searches were conducted across five major databases in August 2018 and repeated in April 2020, and included studies reporting findings from primary research regardless of method (quantitative, qualitative, mixed). Articles that related to the clinical setting were excluded. Our search identified 221 articles that met our search criteria. This included 118 quantitative, 69 qualitative and 34 mixed methods studies. These articles included a total number of 118,874 stakeholders with research participants (85,270/72%) and members of the general public (40,967/35%) being the largest groups represented. The articles spanned at least 22 different countries with most (144/65%) being from the USA. Most (76%) discussed clinical research projects, rather than biobanks. More than half (58%) gauged views that were hypothetical. We found overwhelming evidence of high interest in return of IRR from potential and actual genomic research participants. There is also a general willingness to provide such results by researchers and health professionals, although they tend to adopt a more cautious stance. While all results are desired to some degree, those that have the potential to change clinical management are generally prioritized by all stakeholders. Professional stakeholders appear more willing to return results that are reliable and clinically relevant than those that are less reliable and lack clinical relevance. The lack of evidence for significant enduring psychological harm and the clear benefits to some research participants suggest that researchers should be returning actionable IRRs to participants.
format	article
author	Danya F. Vears Joel T. Minion Stephanie J. Roberts James Cummings Mavis Machirori Mwenza Blell Isabelle Budin-Ljøsne Lorraine Cowley Stephanie O. M. Dyke Clara Gaff Robert Green Alison Hall Amber L. Johns Bartha M. Knoppers Stephanie Mulrine Christine Patch Eva Winkler Madeleine J. Murtagh
author_facet	Danya F. Vears Joel T. Minion Stephanie J. Roberts James Cummings Mavis Machirori Mwenza Blell Isabelle Budin-Ljøsne Lorraine Cowley Stephanie O. M. Dyke Clara Gaff Robert Green Alison Hall Amber L. Johns Bartha M. Knoppers Stephanie Mulrine Christine Patch Eva Winkler Madeleine J. Murtagh
author_sort	Danya F. Vears
title	Return of individual research results from genomic research: A systematic review of stakeholder perspectives
title_short	Return of individual research results from genomic research: A systematic review of stakeholder perspectives
title_full	Return of individual research results from genomic research: A systematic review of stakeholder perspectives
title_fullStr	Return of individual research results from genomic research: A systematic review of stakeholder perspectives
title_full_unstemmed	Return of individual research results from genomic research: A systematic review of stakeholder perspectives
title_sort	return of individual research results from genomic research: a systematic review of stakeholder perspectives
publisher	Public Library of Science (PLoS)
publishDate	2021
url	https://doaj.org/article/08013997ec0e494496b417420b999001
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Return of individual research results from genomic research: A systematic review of stakeholder perspectives

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