Perspectives and ethical considerations for return of genetics and genomics research results: a qualitative study of genomics researchers in Uganda

Abstract Background The return of genetics and genomics research results has been a subject of ongoing global debate. Such feedback is ethically desirable to update participants on research findings particularly those deemed clinically significant. Although there is limited literature, debate contin...

Descripción completa

Guardado en:

Detalles Bibliográficos
Autores principales:	Joseph Ochieng, Betty Kwagala, John Barugahare, Erisa Mwaka, Deborah Ekusai-Sebatta, Joseph Ali, Nelson K. Sewankambo
Formato:	article
Lenguaje:	EN
Publicado:	BMC 2021
Materias:	Perspectives Ethical considerations Return of results Genetics Genomics research Researchers Medical philosophy. Medical ethics R723-726
Acceso en línea:	https://doaj.org/article/513be0920eb148d09682f74f8cedfd92
Etiquetas:	Agregar Etiqueta Sin Etiquetas, Sea el primero en etiquetar este registro!

id	oai:doaj.org-article:513be0920eb148d09682f74f8cedfd92
record_format	dspace
spelling	oai:doaj.org-article:513be0920eb148d09682f74f8cedfd922021-11-21T12:02:33ZPerspectives and ethical considerations for return of genetics and genomics research results: a qualitative study of genomics researchers in Uganda10.1186/s12910-021-00724-11472-6939https://doaj.org/article/513be0920eb148d09682f74f8cedfd922021-11-01T00:00:00Zhttps://doi.org/10.1186/s12910-021-00724-1https://doaj.org/toc/1472-6939Abstract Background The return of genetics and genomics research results has been a subject of ongoing global debate. Such feedback is ethically desirable to update participants on research findings particularly those deemed clinically significant. Although there is limited literature, debate continues in African on what constitutes appropriate practice regarding the return of results for genetics and genomics research. This study explored perspectives and ethical considerations of Ugandan genomics researchers regarding the return of genetics and genomics research results. Methods This was a qualitative study that employed in-depth interviews. Thirty participants were purposively selected based on their expertise as genomics researchers in Uganda. Data were analysed through content analysis along the main themes of the study using a comprehensive thematic matrix, to identify common patterns arising from the narratives. NVivo software 12 was used to support data analysis. Results The return of genetics and genomics research results was generally acceptable to researchers, and some indicated that they had previously returned individual or aggregate results to participants and communities. The main reasons cited for sharing research results with participants included their clinical utility, actionability and overall benefit to society. Ethical considerations for appropriate return of results included a need for effective community engagement, genetic counselling prior to disclosure of the results, adequate informed consent, and proper assessment of the implications of, or consequences of returning of results. However, the approaches to return of results were perceived as unstandardized due to the lack of appropriate regulatory frameworks. Conclusions The return of genetic and genomic research results is generally acceptable to researchers despite the lack of appropriate regulatory frameworks. Ethical considerations for return of genetics and genomics research results are highly divergent, hence the need for national ethical guidelines to appropriately regulate the practice.Joseph OchiengBetty KwagalaJohn BarugahareErisa MwakaDeborah Ekusai-SebattaJoseph AliNelson K. SewankamboBMCarticlePerspectivesEthical considerationsReturn of resultsGeneticsGenomics researchResearchersMedical philosophy. Medical ethicsR723-726ENBMC Medical Ethics, Vol 22, Iss 1, Pp 1-9 (2021)
institution	DOAJ
collection	DOAJ
language	EN
topic	Perspectives Ethical considerations Return of results Genetics Genomics research Researchers Medical philosophy. Medical ethics R723-726
spellingShingle	Perspectives Ethical considerations Return of results Genetics Genomics research Researchers Medical philosophy. Medical ethics R723-726 Joseph Ochieng Betty Kwagala John Barugahare Erisa Mwaka Deborah Ekusai-Sebatta Joseph Ali Nelson K. Sewankambo Perspectives and ethical considerations for return of genetics and genomics research results: a qualitative study of genomics researchers in Uganda
description	Abstract Background The return of genetics and genomics research results has been a subject of ongoing global debate. Such feedback is ethically desirable to update participants on research findings particularly those deemed clinically significant. Although there is limited literature, debate continues in African on what constitutes appropriate practice regarding the return of results for genetics and genomics research. This study explored perspectives and ethical considerations of Ugandan genomics researchers regarding the return of genetics and genomics research results. Methods This was a qualitative study that employed in-depth interviews. Thirty participants were purposively selected based on their expertise as genomics researchers in Uganda. Data were analysed through content analysis along the main themes of the study using a comprehensive thematic matrix, to identify common patterns arising from the narratives. NVivo software 12 was used to support data analysis. Results The return of genetics and genomics research results was generally acceptable to researchers, and some indicated that they had previously returned individual or aggregate results to participants and communities. The main reasons cited for sharing research results with participants included their clinical utility, actionability and overall benefit to society. Ethical considerations for appropriate return of results included a need for effective community engagement, genetic counselling prior to disclosure of the results, adequate informed consent, and proper assessment of the implications of, or consequences of returning of results. However, the approaches to return of results were perceived as unstandardized due to the lack of appropriate regulatory frameworks. Conclusions The return of genetic and genomic research results is generally acceptable to researchers despite the lack of appropriate regulatory frameworks. Ethical considerations for return of genetics and genomics research results are highly divergent, hence the need for national ethical guidelines to appropriately regulate the practice.
format	article
author	Joseph Ochieng Betty Kwagala John Barugahare Erisa Mwaka Deborah Ekusai-Sebatta Joseph Ali Nelson K. Sewankambo
author_facet	Joseph Ochieng Betty Kwagala John Barugahare Erisa Mwaka Deborah Ekusai-Sebatta Joseph Ali Nelson K. Sewankambo
author_sort	Joseph Ochieng
title	Perspectives and ethical considerations for return of genetics and genomics research results: a qualitative study of genomics researchers in Uganda
title_short	Perspectives and ethical considerations for return of genetics and genomics research results: a qualitative study of genomics researchers in Uganda
title_full	Perspectives and ethical considerations for return of genetics and genomics research results: a qualitative study of genomics researchers in Uganda
title_fullStr	Perspectives and ethical considerations for return of genetics and genomics research results: a qualitative study of genomics researchers in Uganda
title_full_unstemmed	Perspectives and ethical considerations for return of genetics and genomics research results: a qualitative study of genomics researchers in Uganda
title_sort	perspectives and ethical considerations for return of genetics and genomics research results: a qualitative study of genomics researchers in uganda
publisher	BMC
publishDate	2021
url	https://doaj.org/article/513be0920eb148d09682f74f8cedfd92
work_keys_str_mv	AT josephochieng perspectivesandethicalconsiderationsforreturnofgeneticsandgenomicsresearchresultsaqualitativestudyofgenomicsresearchersinuganda AT bettykwagala perspectivesandethicalconsiderationsforreturnofgeneticsandgenomicsresearchresultsaqualitativestudyofgenomicsresearchersinuganda AT johnbarugahare perspectivesandethicalconsiderationsforreturnofgeneticsandgenomicsresearchresultsaqualitativestudyofgenomicsresearchersinuganda AT erisamwaka perspectivesandethicalconsiderationsforreturnofgeneticsandgenomicsresearchresultsaqualitativestudyofgenomicsresearchersinuganda AT deborahekusaisebatta perspectivesandethicalconsiderationsforreturnofgeneticsandgenomicsresearchresultsaqualitativestudyofgenomicsresearchersinuganda AT josephali perspectivesandethicalconsiderationsforreturnofgeneticsandgenomicsresearchresultsaqualitativestudyofgenomicsresearchersinuganda AT nelsonksewankambo perspectivesandethicalconsiderationsforreturnofgeneticsandgenomicsresearchresultsaqualitativestudyofgenomicsresearchersinuganda
_version_	1718419302465404928

Perspectives and ethical considerations for return of genetics and genomics research results: a qualitative study of genomics researchers in Uganda

Ejemplares similares