title: Community perspectives on research consent involving vulnerable children in Western Kenya.
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.
authors.affiliation: Indiana University, 107 S. Indiana Ave., Bloomington, IN 47405-7000, USA. rvreeman@iupui.edu
authors.forename: Rachel
authors.initials: R
authors.lastname: Vreeman
authors.forename: Eunice
authors.initials: E
authors.lastname: Kamaara
authors.forename: Allan
authors.initials: A
authors.lastname: Kamanda
authors.forename: David
authors.initials: D
authors.lastname: Ayuku
authors.forename: Winstone
authors.initials: W
authors.lastname: Nyandiko
authors.forename: Lukoye
authors.initials: L
authors.lastname: Atwoli
authors.forename: Samuel
authors.initials: S
authors.lastname: Ayaya
authors.forename: Peter
authors.initials: P
authors.lastname: Gisore
authors.forename: Michael
authors.initials: M
authors.lastname: Scanlon
authors.forename: Paula
authors.initials: P
authors.lastname: Braitstein
mesh_terms: D000328:Adult; D000368:Aged; D001290:Attitude; D017028:Caregivers; D002648:Child; D054540:Child, Orphaned; D003256:Community Participation; D054521:Cultural Competency; D003469:Culture; D032984:Ethics, Research; D005260:Female; D018453:Homeless Youth; D006801:Humans; D007258:Informed Consent / Q000941:ethics*; D038622:Internationality; D007630:Kenya; D007857:Leadership; D008297:Male; D010290:Parents; D026684:Personal Autonomy; D012111:Residence Characteristics; D035862:Vulnerable Populations