Literature DB >> 23086047

Community perspectives on research consent involving vulnerable children in Western Kenya.

Rachel Vreeman1, Eunice Kamaara, Allan Kamanda, David Ayuku, Winstone Nyandiko, Lukoye Atwoli, Samuel Ayaya, Peter Gisore, Michael Scanlon, Paula Braitstein.   

Abstract

Involving vulnerable pediatric populations in international research requires culturally appropriate ethical protections. We sought to use mabaraza, traditional East African community assemblies, to understand how a community in western Kenya viewed participation of children in health research and informed consent and assent processes. Results from 108 participants revealed generally positive attitudes towards involving vulnerable children in research, largely because they assumed children would directly benefit. Consent from parents or guardians was understood as necessary for participation while gaining child assent was not. They felt other caregivers, community leaders, and even community assemblies could participate in the consent process. Community members believed research involving orphans and street children could benefit these vulnerable populations, but would require special processes for consent.

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Year:  2012        PMID: 23086047      PMCID: PMC3771107          DOI: 10.1525/jer.2012.7.4.44

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


  16 in total

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Authors:  Françoise Baylis; Jocelyn Downie; Nuala Kenny
Journal:  IRB       Date:  1999 Jul-Aug

2.  Informed consent for pediatric research: is it really possible?

Authors:  Eric Kodish
Journal:  J Pediatr       Date:  2003-02       Impact factor: 4.406

3.  Should children decide whether they are enrolled in nonbeneficial research?

Authors:  David Wendler; Seema Shah
Journal:  Am J Bioeth       Date:  2003       Impact factor: 11.229

4.  We should reject passive resignation in favor of requiring the assent of younger children for participation in nonbeneficial research.

Authors:  Robert M Nelson; William W Reynolds
Journal:  Am J Bioeth       Date:  2003       Impact factor: 11.229

Review 5.  Assent in paediatric research: theoretical and practical considerations.

Authors:  D S Wendler
Journal:  J Med Ethics       Date:  2006-04       Impact factor: 2.903

6.  Partnerships in international health. The Indiana University-Moi University experience.

Authors:  R M Einterz; C R Kelley; J J Mamlin; D E Van Reken
Journal:  Infect Dis Clin North Am       Date:  1995-06       Impact factor: 5.982

7.  Aligning community engagement with traditional authority structures in global health research: a case study from northern Ghana.

Authors:  Paulina O Tindana; Linda Rozmovits; Renaud F Boulanger; Sunita V S Bandewar; Raymond A Aborigo; Abraham V O Hodgson; Pamela Kolopack; James V Lavery
Journal:  Am J Public Health       Date:  2011-08-18       Impact factor: 9.308

8.  'Even if they ask you to stand by a tree all day, you will have to do it (laughter)...!': community voices on the notion and practice of informed consent for biomedical research in developing countries.

Authors:  C S Molyneux; D R Wassenaar; N Peshu; K Marsh
Journal:  Soc Sci Med       Date:  2005-07       Impact factor: 4.634

Review 9.  Ethical and practical challenges in implementing informed consent in HIV/AIDS clinical trials in developing or resource-limited countries.

Authors:  Kyriaki Mystakidou; Irene Panagiotou; Stelios Katsaragakis; Eleni Tsilika; Efi Parpa
Journal:  SAHARA J       Date:  2009-09

10.  Seven vulnerabilities in the pediatric research subject.

Authors:  Kenneth Kipnis
Journal:  Theor Med Bioeth       Date:  2003
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  8 in total

1.  The Role of Inclusion Benefits in Ethics Committee Assessment of Research Studies.

Authors:  Stuart Rennie; Suzanne Day; Allison Mathews; Adam Gilbertson; Winfred K Luseno; Joseph D Tucker; Gail E Henderson
Journal:  Ethics Hum Res       Date:  2019-05

2.  The Significance of Benefit Perceptions for the Ethics of HIV Research Involving Adolescents in Kenya.

Authors:  Stuart Rennie; Allison K Groves; Denise Dion Hallfors; Bonita J Iritani; Fredrick S Odongo; Winnie K Luseno
Journal:  J Empir Res Hum Res Ethics       Date:  2017-07-21       Impact factor: 1.742

Review 3.  Adolescent participation in HIV research: consortium experience in low and middle-income countries and scoping review.

Authors:  Suzanne Day; Bill G Kapogiannis; Seema K Shah; Erin C Wilson; Theodore D Ruel; Donaldson F Conserve; Ann Strode; Geri R Donenberg; Pamela Kohler; Catherine Slack; Oliver Ezechi; Joseph D Tucker
Journal:  Lancet HIV       Date:  2020-12       Impact factor: 16.070

4.  Adapting ethical guidelines for adolescent health research to street-connected children and youth in low- and middle-income countries: a case study from western Kenya.

Authors:  L Embleton; M A Ott; J Wachira; V Naanyu; A Kamanda; D Makori; D Ayuku; P Braitstein
Journal:  BMC Med Ethics       Date:  2015-12-18       Impact factor: 2.652

5.  Neglected Population, Neglected Right: Children Living with HIV and the Right to Science.

Authors:  Michael L Scanlon; Gillian MacNaughton; Courtenay Sprague
Journal:  Health Hum Rights       Date:  2017-12

6.  How should assent to research be sought in low income settings? Perspectives from parents and children in Southern Malawi.

Authors:  Helen Mangochi; Kate Gooding; Aisleen Bennett; Michael Parker; Nicola Desmond; Susan Bull
Journal:  BMC Med Ethics       Date:  2019-05-14       Impact factor: 2.652

7.  Cultural considerations for informed consent in paediatric research in low/middle-income countries: a scoping review.

Authors:  Marcela Colom; Peter Rohloff
Journal:  BMJ Paediatr Open       Date:  2018-12-05

8.  Parental waivers to enable adolescent participation in certain forms of health research: lessons from a South African case study.

Authors:  Ann Strode; Zaynab Essack
Journal:  BMC Med Ethics       Date:  2022-09-24       Impact factor: 2.834

  8 in total

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