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“Is There Anything Else You Would Like to Add?”: The Ethics of (Not) Addressing Research Participants' Top Concerns in Public Health Emergency Health Research
When conducting interviews or focus groups, researchers often end with a simple question; “Is there anything else you would like to add?” This article takes responses to this question provided by participants in a study of “West Africans' Perceptions of Ebola research” as its point of departure...
Autores principales: | , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
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Frontiers Media S.A.
2022
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Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8826083/ https://www.ncbi.nlm.nih.gov/pubmed/35155325 http://dx.doi.org/10.3389/fpubh.2022.796414 |
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author | Nouvet, Elysée Hunt, Matthew Schwartz, Lisa |
author_facet | Nouvet, Elysée Hunt, Matthew Schwartz, Lisa |
author_sort | Nouvet, Elysée |
collection | PubMed |
description | When conducting interviews or focus groups, researchers often end with a simple question; “Is there anything else you would like to add?” This article takes responses to this question provided by participants in a study of “West Africans' Perceptions of Ebola research” as its point of departure. A number of participants in that study accepted the invitation to add on to their interview at its end with details of suffering from the sequelae of Ebola in their communities, and criticisms of state social abandonment. Some explicitly asked the researcher to ensure the suffering of Ebola survivors would be recognized at the international level. These closing words exceeded the objectives of the study within which they emerged. This was a study focused on lived experiences and decision-making to participate in Ebola research during or after the 2013–16 West Africa Ebola outbreak. The study aimed to inform the ethical conduct of research in future public health emergencies. What to do, then, in the face of these participants' entreaties to the interviewer for action to address Ebola survivors' suffering and social abandonment? Can and should the public health emergency or qualitative researcher better anticipate such requests? Where participants' expressed concerns and hopes for the impact of a study exceed its intended scope and the researchers' original intentions, what is at stake ethically in how we respond to those entreaties as researchers? This paper offers reflections on these questions. In doing so, our intention is to open up a space for further consideration and debate on the ethics of how researchers respond to unanticipated requests made to them in the course of research projects, to leverage their power and privilege to advance local priorities. |
format | Online Article Text |
id | pubmed-8826083 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2022 |
publisher | Frontiers Media S.A. |
record_format | MEDLINE/PubMed |
spelling | pubmed-88260832022-02-10 “Is There Anything Else You Would Like to Add?”: The Ethics of (Not) Addressing Research Participants' Top Concerns in Public Health Emergency Health Research Nouvet, Elysée Hunt, Matthew Schwartz, Lisa Front Public Health Public Health When conducting interviews or focus groups, researchers often end with a simple question; “Is there anything else you would like to add?” This article takes responses to this question provided by participants in a study of “West Africans' Perceptions of Ebola research” as its point of departure. A number of participants in that study accepted the invitation to add on to their interview at its end with details of suffering from the sequelae of Ebola in their communities, and criticisms of state social abandonment. Some explicitly asked the researcher to ensure the suffering of Ebola survivors would be recognized at the international level. These closing words exceeded the objectives of the study within which they emerged. This was a study focused on lived experiences and decision-making to participate in Ebola research during or after the 2013–16 West Africa Ebola outbreak. The study aimed to inform the ethical conduct of research in future public health emergencies. What to do, then, in the face of these participants' entreaties to the interviewer for action to address Ebola survivors' suffering and social abandonment? Can and should the public health emergency or qualitative researcher better anticipate such requests? Where participants' expressed concerns and hopes for the impact of a study exceed its intended scope and the researchers' original intentions, what is at stake ethically in how we respond to those entreaties as researchers? This paper offers reflections on these questions. In doing so, our intention is to open up a space for further consideration and debate on the ethics of how researchers respond to unanticipated requests made to them in the course of research projects, to leverage their power and privilege to advance local priorities. Frontiers Media S.A. 2022-01-26 /pmc/articles/PMC8826083/ /pubmed/35155325 http://dx.doi.org/10.3389/fpubh.2022.796414 Text en Copyright © 2022 Nouvet, Hunt and Schwartz. https://creativecommons.org/licenses/by/4.0/This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms. |
spellingShingle | Public Health Nouvet, Elysée Hunt, Matthew Schwartz, Lisa “Is There Anything Else You Would Like to Add?”: The Ethics of (Not) Addressing Research Participants' Top Concerns in Public Health Emergency Health Research |
title | “Is There Anything Else You Would Like to Add?”: The Ethics of (Not) Addressing Research Participants' Top Concerns in Public Health Emergency Health Research |
title_full | “Is There Anything Else You Would Like to Add?”: The Ethics of (Not) Addressing Research Participants' Top Concerns in Public Health Emergency Health Research |
title_fullStr | “Is There Anything Else You Would Like to Add?”: The Ethics of (Not) Addressing Research Participants' Top Concerns in Public Health Emergency Health Research |
title_full_unstemmed | “Is There Anything Else You Would Like to Add?”: The Ethics of (Not) Addressing Research Participants' Top Concerns in Public Health Emergency Health Research |
title_short | “Is There Anything Else You Would Like to Add?”: The Ethics of (Not) Addressing Research Participants' Top Concerns in Public Health Emergency Health Research |
title_sort | “is there anything else you would like to add?”: the ethics of (not) addressing research participants' top concerns in public health emergency health research |
topic | Public Health |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8826083/ https://www.ncbi.nlm.nih.gov/pubmed/35155325 http://dx.doi.org/10.3389/fpubh.2022.796414 |
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