Consent and community engagement in diverse research contexts: reviewing and developing research and practice

Sassy Molyneux; Susan Bull; Phaik Yeong Cheah; Khin Maung Lwin; Vicki Marsh; Michael Parker; Sally Theobald; Sunita Bandewar; Gabriela Calazans; Tamara Chipasula; Kheng Chheng; Alun Davies; Michael Dunn; M. A. Faiz; John Imrie; Dorcas Kamuya; Angeliki Kerasidou; James V. Lavery; Graham Lindegger; Eleanor MacPherson; Charles T. Muga; Stephen Nakibinge; Paul Ndebele; John Sadalaki; Janet Seeley; Mark Sheehan; Rhian Twine; Jantina De Vries

doi:10.1525/jer.2013.8.4.1

Consent and community engagement in diverse research contexts: reviewing and developing research and practice

Sassy Molyneux, Susan Bull, Phaik Yeong Cheah, Khin Maung Lwin, Vicki Marsh, Michael Parker, Sally Theobald, Sunita Bandewar, Gabriela Calazans, Tamara Chipasula, Kheng Chheng, Alun Davies, Michael Dunn, M. A. Faiz, John Imrie, Dorcas Kamuya, Angeliki Kerasidou, James V. Lavery, Graham Lindegger, Eleanor MacPhersonCharles T. Muga, Stephen Nakibinge, Paul Ndebele, John Sadalaki, Janet Seeley, Mark Sheehan, Rhian Twine, Jantina De Vries

Research output: Contribution to journal › Article › peer-review

120 Citations (Scopus)

Abstract

Consent and community engagement (CE) in health research are two aspects of a single concern—that research is carried out in a respectful manner where social value is maximized. There are important overlaps and interdependencies between consent and CE; for example, CE can provide insights into how best to tailor consent to context and can be an important component of consent processes. Engaging communities can also have intrinsic and instrumental value beyond consent; for example, as a means of showing respect and identifying appropriate ways of working respectfully. In this paper we critically examine how CE and consent processes are characterized, conducted, and evaluated in diverse health research contexts, and propose a preliminary research agenda to support future learning in these critical areas.

Original language	English
Pages (from-to)	1-18
Number of pages	18
Journal	Journal of Empirical Research on Human Research Ethics
Volume	8
Issue number	4
DOIs	https://doi.org/10.1525/jer.2013.8.4.1
Publication status	Published - 1 Oct 2013

Keywords

Africa
Asia
Community engagement
Consent
Research
Research ethics

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Molyneux, S., Bull, S., Cheah, P. Y., Lwin, K. M., Marsh, V., Parker, M., Theobald, S., Bandewar, S., Calazans, G., Chipasula, T., Chheng, K., Davies, A., Dunn, M., Faiz, M. A., Imrie, J., Kamuya, D., Kerasidou, A., Lavery, J. V., Lindegger, G., ... De Vries, J. (2013). Consent and community engagement in diverse research contexts: reviewing and developing research and practice. Journal of Empirical Research on Human Research Ethics, 8(4), 1-18. https://doi.org/10.1525/jer.2013.8.4.1

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abstract = "Consent and community engagement (CE) in health research are two aspects of a single concern—that research is carried out in a respectful manner where social value is maximized. There are important overlaps and interdependencies between consent and CE; for example, CE can provide insights into how best to tailor consent to context and can be an important component of consent processes. Engaging communities can also have intrinsic and instrumental value beyond consent; for example, as a means of showing respect and identifying appropriate ways of working respectfully. In this paper we critically examine how CE and consent processes are characterized, conducted, and evaluated in diverse health research contexts, and propose a preliminary research agenda to support future learning in these critical areas.",

keywords = "Africa, Asia, Community engagement, Consent, Research, Research ethics",

author = "Sassy Molyneux and Susan Bull and Cheah, \{Phaik Yeong\} and Lwin, \{Khin Maung\} and Vicki Marsh and Michael Parker and Sally Theobald and Sunita Bandewar and Gabriela Calazans and Tamara Chipasula and Kheng Chheng and Alun Davies and Michael Dunn and Faiz, \{M. A.\} and John Imrie and Dorcas Kamuya and Angeliki Kerasidou and Lavery, \{James V.\} and Graham Lindegger and Eleanor MacPherson and Muga, \{Charles T.\} and Stephen Nakibinge and Paul Ndebele and John Sadalaki and Janet Seeley and Mark Sheehan and Rhian Twine and \{De Vries\}, Jantina",

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doi = "10.1525/jer.2013.8.4.1",

language = "English",

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Molyneux, S, Bull, S, Cheah, PY, Lwin, KM, Marsh, V, Parker, M, Theobald, S, Bandewar, S, Calazans, G, Chipasula, T, Chheng, K, Davies, A, Dunn, M, Faiz, MA, Imrie, J, Kamuya, D, Kerasidou, A, Lavery, JV, Lindegger, G, MacPherson, E, Muga, CT, Nakibinge, S, Ndebele, P, Sadalaki, J, Seeley, J, Sheehan, M, Twine, R & De Vries, J 2013, 'Consent and community engagement in diverse research contexts: reviewing and developing research and practice', Journal of Empirical Research on Human Research Ethics, vol. 8, no. 4, pp. 1-18. https://doi.org/10.1525/jer.2013.8.4.1

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AU - Molyneux, Sassy

AU - Bull, Susan

AU - Cheah, Phaik Yeong

AU - Lwin, Khin Maung

AU - Marsh, Vicki

AU - Parker, Michael

AU - Theobald, Sally

AU - Bandewar, Sunita

AU - Calazans, Gabriela

AU - Chipasula, Tamara

AU - Chheng, Kheng

AU - Davies, Alun

AU - Dunn, Michael

AU - Faiz, M. A.

AU - Imrie, John

AU - Kamuya, Dorcas

AU - Kerasidou, Angeliki

AU - Lavery, James V.

AU - Lindegger, Graham

AU - MacPherson, Eleanor

AU - Muga, Charles T.

AU - Nakibinge, Stephen

AU - Ndebele, Paul

AU - Sadalaki, John

AU - Seeley, Janet

AU - Sheehan, Mark

AU - Twine, Rhian

AU - De Vries, Jantina

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N2 - Consent and community engagement (CE) in health research are two aspects of a single concern—that research is carried out in a respectful manner where social value is maximized. There are important overlaps and interdependencies between consent and CE; for example, CE can provide insights into how best to tailor consent to context and can be an important component of consent processes. Engaging communities can also have intrinsic and instrumental value beyond consent; for example, as a means of showing respect and identifying appropriate ways of working respectfully. In this paper we critically examine how CE and consent processes are characterized, conducted, and evaluated in diverse health research contexts, and propose a preliminary research agenda to support future learning in these critical areas.

AB - Consent and community engagement (CE) in health research are two aspects of a single concern—that research is carried out in a respectful manner where social value is maximized. There are important overlaps and interdependencies between consent and CE; for example, CE can provide insights into how best to tailor consent to context and can be an important component of consent processes. Engaging communities can also have intrinsic and instrumental value beyond consent; for example, as a means of showing respect and identifying appropriate ways of working respectfully. In this paper we critically examine how CE and consent processes are characterized, conducted, and evaluated in diverse health research contexts, and propose a preliminary research agenda to support future learning in these critical areas.

KW - Africa

KW - Asia

KW - Community engagement

KW - Consent

KW - Research

KW - Research ethics

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DO - 10.1525/jer.2013.8.4.1

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JO - Journal of Empirical Research on Human Research Ethics

JF - Journal of Empirical Research on Human Research Ethics

IS - 4

ER -

Consent and community engagement in diverse research contexts: reviewing and developing research and practice

Abstract

Keywords

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