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Benefits in Cash or in Kind? A Community Consultation on Types of Benefits in Health Research on the Kenyan Coast

BACKGROUND: Providing benefits and payments to participants in health research, either in cash or in kind, is a common but ethically controversial practice. While much literature has concentrated on appropriate levels of benefits or payments, this paper focuses on less well explored ethical issues a...

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Autores principales: Njue, Maureen, Molyneux, Sassy, Kombe, Francis, Mwalukore, Salim, Kamuya, Dorcas, Marsh, Vicki
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Public Library of Science 2015
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4444261/
https://www.ncbi.nlm.nih.gov/pubmed/26010783
http://dx.doi.org/10.1371/journal.pone.0127842
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author Njue, Maureen
Molyneux, Sassy
Kombe, Francis
Mwalukore, Salim
Kamuya, Dorcas
Marsh, Vicki
author_facet Njue, Maureen
Molyneux, Sassy
Kombe, Francis
Mwalukore, Salim
Kamuya, Dorcas
Marsh, Vicki
author_sort Njue, Maureen
collection PubMed
description BACKGROUND: Providing benefits and payments to participants in health research, either in cash or in kind, is a common but ethically controversial practice. While much literature has concentrated on appropriate levels of benefits or payments, this paper focuses on less well explored ethical issues around the nature of study benefits, drawing on views of community members living close to an international health research centre in Kenya. METHODS: The consultation, including 90 residents purposively chosen to reflect diversity, used a two-stage deliberative process. Five half-day workshops were each followed by between two and four small group discussions, within a two week period (total 16 groups). During workshops and small groups, facilitators used participatory methods to share information, and promote reflection and debate on ethical issues around types of benefits, including cash, goods, medical and community benefits. Data from workshop and field notes, and voice recordings of small group discussions, were managed using Nvivo 10 and analysed using a Framework Analysis approach. FINDINGS AND CONCLUSIONS: The methods generated in-depth discussion with high levels of engagement. Particularly for the most-poor, under-compensation of time in research carries risks of serious harm. Cash payments may best support compensation of costs experienced; while highly valued, goods and medical benefits may be more appropriate as an ‘appreciation’ or incentive for participation. Community benefits were seen as important in supporting but not replacing individual-level benefits, and in building trust in researcher-community relations. Cash payments were seen to have higher risks of undue inducement, commercialising relationships and generating family conflicts than other benefits, particularly where payments are high. Researchers should consider and account for burdens families may experience when children are involved in research. Careful context-specific research planning and skilled and consistent communication about study benefits and payments are important, including in mitigating potential negative effects.
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spelling pubmed-44442612015-06-16 Benefits in Cash or in Kind? A Community Consultation on Types of Benefits in Health Research on the Kenyan Coast Njue, Maureen Molyneux, Sassy Kombe, Francis Mwalukore, Salim Kamuya, Dorcas Marsh, Vicki PLoS One Research Article BACKGROUND: Providing benefits and payments to participants in health research, either in cash or in kind, is a common but ethically controversial practice. While much literature has concentrated on appropriate levels of benefits or payments, this paper focuses on less well explored ethical issues around the nature of study benefits, drawing on views of community members living close to an international health research centre in Kenya. METHODS: The consultation, including 90 residents purposively chosen to reflect diversity, used a two-stage deliberative process. Five half-day workshops were each followed by between two and four small group discussions, within a two week period (total 16 groups). During workshops and small groups, facilitators used participatory methods to share information, and promote reflection and debate on ethical issues around types of benefits, including cash, goods, medical and community benefits. Data from workshop and field notes, and voice recordings of small group discussions, were managed using Nvivo 10 and analysed using a Framework Analysis approach. FINDINGS AND CONCLUSIONS: The methods generated in-depth discussion with high levels of engagement. Particularly for the most-poor, under-compensation of time in research carries risks of serious harm. Cash payments may best support compensation of costs experienced; while highly valued, goods and medical benefits may be more appropriate as an ‘appreciation’ or incentive for participation. Community benefits were seen as important in supporting but not replacing individual-level benefits, and in building trust in researcher-community relations. Cash payments were seen to have higher risks of undue inducement, commercialising relationships and generating family conflicts than other benefits, particularly where payments are high. Researchers should consider and account for burdens families may experience when children are involved in research. Careful context-specific research planning and skilled and consistent communication about study benefits and payments are important, including in mitigating potential negative effects. Public Library of Science 2015-05-26 /pmc/articles/PMC4444261/ /pubmed/26010783 http://dx.doi.org/10.1371/journal.pone.0127842 Text en © 2015 Njue et al http://creativecommons.org/licenses/by/4.0/ This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are properly credited.
spellingShingle Research Article
Njue, Maureen
Molyneux, Sassy
Kombe, Francis
Mwalukore, Salim
Kamuya, Dorcas
Marsh, Vicki
Benefits in Cash or in Kind? A Community Consultation on Types of Benefits in Health Research on the Kenyan Coast
title Benefits in Cash or in Kind? A Community Consultation on Types of Benefits in Health Research on the Kenyan Coast
title_full Benefits in Cash or in Kind? A Community Consultation on Types of Benefits in Health Research on the Kenyan Coast
title_fullStr Benefits in Cash or in Kind? A Community Consultation on Types of Benefits in Health Research on the Kenyan Coast
title_full_unstemmed Benefits in Cash or in Kind? A Community Consultation on Types of Benefits in Health Research on the Kenyan Coast
title_short Benefits in Cash or in Kind? A Community Consultation on Types of Benefits in Health Research on the Kenyan Coast
title_sort benefits in cash or in kind? a community consultation on types of benefits in health research on the kenyan coast
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4444261/
https://www.ncbi.nlm.nih.gov/pubmed/26010783
http://dx.doi.org/10.1371/journal.pone.0127842
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