Literature DB >> 24169417

Consent and community engagement in diverse research contexts.

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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.

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Year:  2013        PMID: 24169417      PMCID: PMC4836561          DOI: 10.1525/jer.2013.8.4.1

Source DB:  PubMed          Journal:  J Empir Res Hum Res Ethics        ISSN: 1556-2646            Impact factor:   1.742


  83 in total

1.  Trust and informed consent: insights from community members on the Kenyan coast.

Authors:  C S Molyneux; N Peshu; K Marsh
Journal:  Soc Sci Med       Date:  2005-02-12       Impact factor: 4.634

2.  The informed consent process in a rural African setting: a case study of the Kassena-Nankana district of Northern Ghana.

Authors:  Paulina Onvomaha Tindana; Nancy Kass; Patricia Akweongo
Journal:  IRB       Date:  2006 May-Jun

3.  Introduction to special issue: advancing the ethics of community-based participatory research.

Authors:  Nancy Shore; Kristine A Wong; Sarena D Seifer; Jessica Grignon; Vanessa Northington Gamble
Journal:  J Empir Res Hum Res Ethics       Date:  2008-06       Impact factor: 1.742

4.  The length of consent documents in oncological trials is doubled in twenty years.

Authors:  O Berger; B H Grønberg; K Sand; S Kaasa; J H Loge
Journal:  Ann Oncol       Date:  2008-10-15       Impact factor: 32.976

5.  How informed is consent in vulnerable populations? Experience using a continuous consent process during the MDP301 vaginal microbicide trial in Mwanza, Tanzania.

Authors:  Andrew Vallely; Shelley Lees; Charles Shagi; Stella Kasindi; Selephina Soteli; Natujwa Kavit; Lisa Vallely; Sheena McCormack; Robert Pool; Richard J Hayes
Journal:  BMC Med Ethics       Date:  2010-06-13       Impact factor: 2.652

Review 6.  Ethical and practical challenges surrounding genetic and genomic research in developing countries.

Authors:  Aceme Nyika
Journal:  Acta Trop       Date:  2009-08-08       Impact factor: 3.112

7.  Informed consent in an antiretroviral trial in Nigeria.

Authors:  Ogenna Manafa; Graham Lindegger; Carel Ijsselmuiden
Journal:  Indian J Med Ethics       Date:  2007 Jan-Mar

8.  Working with Concepts: The Role of Community in International Collaborative Biomedical Research.

Authors:  V M Marsh; D K Kamuya; M J Parker; C S Molyneux
Journal:  Public Health Ethics       Date:  2011-03-02       Impact factor: 1.940

9.  Tailoring consent to context: designing an appropriate consent process for a biomedical study in a low income setting.

Authors:  Fasil Tekola; Susan J Bull; Bobbie Farsides; Melanie J Newport; Adebowale Adeyemo; Charles N Rotimi; Gail Davey
Journal:  PLoS Negl Trop Dis       Date:  2009-07-21

10.  Community involvement in dengue vector control: cluster randomised trial.

Authors:  V Vanlerberghe; M E Toledo; M Rodríguez; D Gomez; A Baly; J R Benitez; P Van der Stuyft
Journal:  BMJ       Date:  2009-06-09
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  59 in total

Review 1.  Implementing Community Engagement for Combination Prevention: Lessons Learnt From the First Year of the HPTN 071 (PopART) Community-Randomized Study.

Authors:  Musonda Simwinga; Virginia Bond; Nozizwe Makola; Graeme Hoddinott; Steve Belemu; Rhonda White; Kwame Shanaube; Janet Seeley; Ayana Moore
Journal:  Curr HIV/AIDS Rep       Date:  2016-08       Impact factor: 5.071

2.  Considering the Importance of Context for Ethical Practice on Reimbursement, Compensation and Incentives for Volunteers in Human Infection Controlled Studies.

Authors:  Primus Che Chi; Esther Owino; Irene Jao; Vicki Marsh; Dorcas Kamuya
Journal:  Am J Bioeth       Date:  2021-03       Impact factor: 14.676

3.  Vulnerability, Agency, and the Research Encounter: Family Members' Experiences and Perceptions of Participating in an Observational Clinical Study in Kenya.

Authors:  Scholastica M Zakayo; Mary N Kimani; Gladys Sanga; Rita Njeru; Anderson Charo; James A Berkley; Judd L Walson; Maureen Kelley; Vicki Marsh; Sassy Molyneux
Journal:  J Empir Res Hum Res Ethics       Date:  2021-03-25       Impact factor: 1.978

4.  What makes community engagement effective?: Lessons from the Eliminate Dengue Program in Queensland Australia.

Authors:  Pamela A Kolopack; Janet A Parsons; James V Lavery
Journal:  PLoS Negl Trop Dis       Date:  2015-04-13

5.  Exploring researchers' experiences of working with a researcher-driven, population-specific community advisory board in a South African schizophrenia genomics study.

Authors:  Megan M Campbell; Ezra Susser; Jantina de Vries; Adam Baldinger; Goodman Sibeko; Michael M Mndini; Sibonile G Mqulwana; Odwa A Ntola; Raj S Ramesar; Dan J Stein
Journal:  BMC Med Ethics       Date:  2015-07-02       Impact factor: 2.652

6.  "The one who chases you away does not tell you go": silent refusals and complex power relations in research consent processes in Coastal Kenya.

Authors:  Dorcas M Kamuya; Sally J Theobald; Vicki Marsh; Michael Parker; Wenzel P Geissler; Sassy C Molyneux
Journal:  PLoS One       Date:  2015-05-15       Impact factor: 3.240

7.  Towards a Science of Community Stakeholder Engagement in Biomedical HIV Prevention Trials: An Embedded Four-Country Case Study.

Authors:  Peter A Newman; Clara Rubincam; Catherine Slack; Zaynab Essack; Venkatesan Chakrapani; Deng-Min Chuang; Suchon Tepjan; Murali Shunmugam; Surachet Roungprakhon; Carmen Logie; Jennifer Koen; Graham Lindegger
Journal:  PLoS One       Date:  2015-08-21       Impact factor: 3.240

8.  Understandings of genomic research in developing countries: a qualitative study of the views of MalariaGEN participants in Mali.

Authors:  Karim Traore; Susan Bull; Alassane Niare; Salimata Konate; Mahamadou A Thera; Dominic Kwiatkowski; Michael Parker; Ogobara K Doumbo
Journal:  BMC Med Ethics       Date:  2015-06-16       Impact factor: 2.652

9.  "Losing the tombola": a case study describing the use of community consultation in designing the study protocol for a randomised controlled trial of a mental health intervention in two conflict-affected regions.

Authors:  Leslie Shanks; Claudio Moroni; Isabel Cristina Rivera; Debbie Price; Sifa Banzira Clementine; Giovanni Pintaldi
Journal:  BMC Med Ethics       Date:  2015-06-02       Impact factor: 2.652

10.  Model for developing context-sensitive responses to vulnerability in research: managing ethical dilemmas faced by frontline research staff in Kenya.

Authors:  Sassy Molyneux; Priya Sukhtankar; Johnstone Thitiri; Rita Njeru; Kui Muraya; Gladys Sanga; Judd L Walson; James Berkley; Maureen Kelley; Vicki Marsh
Journal:  BMJ Glob Health       Date:  2021-07
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