A qualitative study using traditional community assemblies to investigate community perspectives on informed consent and research participation in western Kenya
Identifieur interne : 001280 ( Pmc/Curation ); précédent : 001279; suivant : 001281A qualitative study using traditional community assemblies to investigate community perspectives on informed consent and research participation in western Kenya
Auteurs : Rachel Vreeman [États-Unis, Kenya] ; Eunice Kamaara [Kenya] ; Allan Kamanda [Kenya] ; David Ayuku [Kenya] ; Winstone Nyandiko [Kenya] ; Lukoye Atwoli [Kenya] ; Samuel Ayaya [Kenya] ; Peter Gisore [Kenya] ; Michael Scanlon [États-Unis] ; Paula Braitstein [Kenya, États-Unis]Source :
- BMC Medical Ethics [ 1472-6939 ] ; 2012.
Abstract
International collaborators face challenges in the design and implementation of ethical biomedical research. Evaluating community understanding of research and processes like informed consent may enable researchers to better protect research participants in a particular setting; however, there exist few studies examining community perspectives in health research, particularly in resource-limited settings, or strategies for engaging the community in research processes. Our goal was to inform ethical research practice in a biomedical research setting in western Kenya and similar resource-limited settings.
We sought to use
Our findings from two
Our study suggests that international biomedical research must account for community understanding of research and informed consent, particularly when involving children. Moreover, traditional community forums, such as
Url:
DOI: 10.1186/1472-6939-13-23
PubMed: 23009744
PubMed Central: 3515354
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Box 4606, Eldoret, 30100, Kenya</nlm:aff><country xml:lang="fr">Kenya</country><wicri:regionArea>USAID - Academic Model Providing Access to Healthcare (AMPATH) Partnership, P.O. 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Box 4606, Eldoret, 30100, Kenya</nlm:aff><country xml:lang="fr">Kenya</country><wicri:regionArea>Department of Behavioural Sciences, School of Medicine, Moi University College of Health Sciences, P.O. Box 4606, Eldoret, 30100</wicri:regionArea></affiliation></author><author><name sortKey="Nyandiko, Winstone" sort="Nyandiko, Winstone" uniqKey="Nyandiko W" first="Winstone" last="Nyandiko">Winstone Nyandiko</name><affiliation wicri:level="1"><nlm:aff id="I2">USAID - Academic Model Providing Access to Healthcare (AMPATH) Partnership, P.O. Box 4606, Eldoret, 30100, Kenya</nlm:aff><country xml:lang="fr">Kenya</country><wicri:regionArea>USAID - Academic Model Providing Access to Healthcare (AMPATH) Partnership, P.O. Box 4606, Eldoret, 30100</wicri:regionArea></affiliation><affiliation wicri:level="1"><nlm:aff id="I7">Department of Child Health and Paediatrics, School of Medicine, Moi University College of Health Sciences, P.O. Box 4606, Eldoret, 30100, Kenya</nlm:aff><country xml:lang="fr">Kenya</country><wicri:regionArea>Department of Child Health and Paediatrics, School of Medicine, Moi University College of Health Sciences, P.O. Box 4606, Eldoret, 30100</wicri:regionArea></affiliation></author><author><name sortKey="Atwoli, Lukoye" sort="Atwoli, Lukoye" uniqKey="Atwoli L" first="Lukoye" last="Atwoli">Lukoye Atwoli</name><affiliation wicri:level="1"><nlm:aff id="I2">USAID - Academic Model Providing Access to Healthcare (AMPATH) Partnership, P.O. Box 4606, Eldoret, 30100, Kenya</nlm:aff><country xml:lang="fr">Kenya</country><wicri:regionArea>USAID - Academic Model Providing Access to Healthcare (AMPATH) Partnership, P.O. Box 4606, Eldoret, 30100</wicri:regionArea></affiliation><affiliation wicri:level="1"><nlm:aff id="I8">Department of Mental Health, School of Medicine, Moi University College of Health Sciences, P.O. Box 4606, Eldoret, 30100, Kenya</nlm:aff><country xml:lang="fr">Kenya</country><wicri:regionArea>Department of Mental Health, School of Medicine, Moi University College of Health Sciences, P.O. Box 4606, Eldoret, 30100</wicri:regionArea></affiliation></author><author><name sortKey="Ayaya, Samuel" sort="Ayaya, Samuel" uniqKey="Ayaya S" first="Samuel" last="Ayaya">Samuel Ayaya</name><affiliation wicri:level="1"><nlm:aff id="I2">USAID - Academic Model Providing Access to Healthcare (AMPATH) Partnership, P.O. Box 4606, Eldoret, 30100, Kenya</nlm:aff><country xml:lang="fr">Kenya</country><wicri:regionArea>USAID - Academic Model Providing Access to Healthcare (AMPATH) Partnership, P.O. Box 4606, Eldoret, 30100</wicri:regionArea></affiliation><affiliation wicri:level="1"><nlm:aff id="I7">Department of Child Health and Paediatrics, School of Medicine, Moi University College of Health Sciences, P.O. Box 4606, Eldoret, 30100, Kenya</nlm:aff><country xml:lang="fr">Kenya</country><wicri:regionArea>Department of Child Health and Paediatrics, School of Medicine, Moi University College of Health Sciences, P.O. Box 4606, Eldoret, 30100</wicri:regionArea></affiliation></author><author><name sortKey="Gisore, Peter" sort="Gisore, Peter" uniqKey="Gisore P" first="Peter" last="Gisore">Peter Gisore</name><affiliation wicri:level="1"><nlm:aff id="I2">USAID - Academic Model Providing Access to Healthcare (AMPATH) Partnership, P.O. Box 4606, Eldoret, 30100, Kenya</nlm:aff><country xml:lang="fr">Kenya</country><wicri:regionArea>USAID - Academic Model Providing Access to Healthcare (AMPATH) Partnership, P.O. Box 4606, Eldoret, 30100</wicri:regionArea></affiliation><affiliation wicri:level="1"><nlm:aff id="I7">Department of Child Health and Paediatrics, School of Medicine, Moi University College of Health Sciences, P.O. Box 4606, Eldoret, 30100, Kenya</nlm:aff><country xml:lang="fr">Kenya</country><wicri:regionArea>Department of Child Health and Paediatrics, School of Medicine, Moi University College of Health Sciences, P.O. Box 4606, Eldoret, 30100</wicri:regionArea></affiliation></author><author><name sortKey="Scanlon, Michael" sort="Scanlon, Michael" uniqKey="Scanlon M" first="Michael" last="Scanlon">Michael Scanlon</name><affiliation wicri:level="1"><nlm:aff id="I1">Department of Pediatrics, Indiana University School of Medicine, 705 Riley Hospital Drive, Room 5900, Indianapolis, IN, 46202, USA</nlm:aff><country xml:lang="fr">États-Unis</country><wicri:regionArea>Department of Pediatrics, Indiana University School of Medicine, 705 Riley Hospital Drive, Room 5900, Indianapolis, IN, 46202</wicri:regionArea></affiliation></author><author><name sortKey="Braitstein, Paula" sort="Braitstein, Paula" uniqKey="Braitstein P" first="Paula" last="Braitstein">Paula Braitstein</name><affiliation wicri:level="1"><nlm:aff id="I2">USAID - Academic Model Providing Access to Healthcare (AMPATH) Partnership, P.O. Box 4606, Eldoret, 30100, Kenya</nlm:aff><country xml:lang="fr">Kenya</country><wicri:regionArea>USAID - Academic Model Providing Access to Healthcare (AMPATH) Partnership, P.O. Box 4606, Eldoret, 30100</wicri:regionArea></affiliation><affiliation wicri:level="1"><nlm:aff id="I3">Regenstrief Institute, Inc., 410 W. 10th St., Suite 2000, Indianapolis, IN, 46202-3012, USA</nlm:aff><country xml:lang="fr">États-Unis</country><wicri:regionArea>Regenstrief Institute, Inc., 410 W. 10th St., Suite 2000, Indianapolis, IN, 46202-3012</wicri:regionArea></affiliation><affiliation wicri:level="1"><nlm:aff id="I9">Department of Medicine, Indiana University School of Medicine, 545 Barnhill Drive, EH 317, Indianapolis, IN, 46202, USA</nlm:aff><country xml:lang="fr">États-Unis</country><wicri:regionArea>Department of Medicine, Indiana University School of Medicine, 545 Barnhill Drive, EH 317, Indianapolis, IN, 46202</wicri:regionArea></affiliation></author></titleStmt><publicationStmt><idno type="wicri:source">PMC</idno><idno type="pmid">23009744</idno><idno type="pmc">3515354</idno><idno type="url">http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3515354</idno><idno type="RBID">PMC:3515354</idno><idno type="doi">10.1186/1472-6939-13-23</idno><date when="2012">2012</date><idno type="wicri:Area/Pmc/Corpus">001281</idno><idno type="wicri:explorRef" wicri:stream="Pmc" wicri:step="Corpus" wicri:corpus="PMC">001281</idno><idno type="wicri:Area/Pmc/Curation">001280</idno><idno type="wicri:explorRef" wicri:stream="Pmc" wicri:step="Curation">001280</idno></publicationStmt><sourceDesc><biblStruct><analytic><title xml:lang="en" level="a" type="main">A qualitative study using traditional community assemblies to investigate community perspectives on informed consent and research participation in western Kenya</title><author><name sortKey="Vreeman, Rachel" sort="Vreeman, Rachel" uniqKey="Vreeman R" first="Rachel" last="Vreeman">Rachel Vreeman</name><affiliation wicri:level="1"><nlm:aff id="I1">Department of Pediatrics, Indiana University School of Medicine, 705 Riley Hospital Drive, Room 5900, Indianapolis, IN, 46202, USA</nlm:aff><country xml:lang="fr">États-Unis</country><wicri:regionArea>Department of Pediatrics, Indiana University School of Medicine, 705 Riley Hospital Drive, Room 5900, Indianapolis, IN, 46202</wicri:regionArea></affiliation><affiliation wicri:level="1"><nlm:aff id="I2">USAID - Academic Model Providing Access to Healthcare (AMPATH) Partnership, P.O. Box 4606, Eldoret, 30100, Kenya</nlm:aff><country xml:lang="fr">Kenya</country><wicri:regionArea>USAID - Academic Model Providing Access to Healthcare (AMPATH) Partnership, P.O. Box 4606, Eldoret, 30100</wicri:regionArea></affiliation><affiliation wicri:level="1"><nlm:aff id="I3">Regenstrief Institute, Inc., 410 W. 10th St., Suite 2000, Indianapolis, IN, 46202-3012, USA</nlm:aff><country xml:lang="fr">États-Unis</country><wicri:regionArea>Regenstrief Institute, Inc., 410 W. 10th St., Suite 2000, Indianapolis, IN, 46202-3012</wicri:regionArea></affiliation><affiliation wicri:level="1"><nlm:aff id="I10">Children’s Health Services Research, Health Information and Translational Sciences Building, Suite #1000, 410 W. 10th St., Indianapolis, IN, 46202, USA</nlm:aff><country xml:lang="fr">États-Unis</country><wicri:regionArea>Children’s Health Services Research, Health Information and Translational Sciences Building, Suite #1000, 410 W. 10th St., Indianapolis, IN, 46202</wicri:regionArea></affiliation></author><author><name sortKey="Kamaara, Eunice" sort="Kamaara, Eunice" uniqKey="Kamaara E" first="Eunice" last="Kamaara">Eunice Kamaara</name><affiliation wicri:level="1"><nlm:aff id="I4">Departments of Philosophy and Religious Studies, Moi University, P.O. Box 3990, Eldoret, 30100, Kenya</nlm:aff><country xml:lang="fr">Kenya</country><wicri:regionArea>Departments of Philosophy and Religious Studies, Moi University, P.O. Box 3990, Eldoret, 30100</wicri:regionArea></affiliation></author><author><name sortKey="Kamanda, Allan" sort="Kamanda, Allan" uniqKey="Kamanda A" first="Allan" last="Kamanda">Allan Kamanda</name><affiliation wicri:level="1"><nlm:aff id="I5">Moi Teaching and Referral Hospital, Nandi Road, P.O. Box 3, Eldoret, 30100, Kenya</nlm:aff><country xml:lang="fr">Kenya</country><wicri:regionArea>Moi Teaching and Referral Hospital, Nandi Road, P.O. Box 3, Eldoret, 30100</wicri:regionArea></affiliation></author><author><name sortKey="Ayuku, David" sort="Ayuku, David" uniqKey="Ayuku D" first="David" last="Ayuku">David Ayuku</name><affiliation wicri:level="1"><nlm:aff id="I6">Department of Behavioural Sciences, School of Medicine, Moi University College of Health Sciences, P.O. Box 4606, Eldoret, 30100, Kenya</nlm:aff><country xml:lang="fr">Kenya</country><wicri:regionArea>Department of Behavioural Sciences, School of Medicine, Moi University College of Health Sciences, P.O. Box 4606, Eldoret, 30100</wicri:regionArea></affiliation></author><author><name sortKey="Nyandiko, Winstone" sort="Nyandiko, Winstone" uniqKey="Nyandiko W" first="Winstone" last="Nyandiko">Winstone Nyandiko</name><affiliation wicri:level="1"><nlm:aff id="I2">USAID - Academic Model Providing Access to Healthcare (AMPATH) Partnership, P.O. Box 4606, Eldoret, 30100, Kenya</nlm:aff><country xml:lang="fr">Kenya</country><wicri:regionArea>USAID - Academic Model Providing Access to Healthcare (AMPATH) Partnership, P.O. Box 4606, Eldoret, 30100</wicri:regionArea></affiliation><affiliation wicri:level="1"><nlm:aff id="I7">Department of Child Health and Paediatrics, School of Medicine, Moi University College of Health Sciences, P.O. Box 4606, Eldoret, 30100, Kenya</nlm:aff><country xml:lang="fr">Kenya</country><wicri:regionArea>Department of Child Health and Paediatrics, School of Medicine, Moi University College of Health Sciences, P.O. Box 4606, Eldoret, 30100</wicri:regionArea></affiliation></author><author><name sortKey="Atwoli, Lukoye" sort="Atwoli, Lukoye" uniqKey="Atwoli L" first="Lukoye" last="Atwoli">Lukoye Atwoli</name><affiliation wicri:level="1"><nlm:aff id="I2">USAID - Academic Model Providing Access to Healthcare (AMPATH) Partnership, P.O. Box 4606, Eldoret, 30100, Kenya</nlm:aff><country xml:lang="fr">Kenya</country><wicri:regionArea>USAID - Academic Model Providing Access to Healthcare (AMPATH) Partnership, P.O. Box 4606, Eldoret, 30100</wicri:regionArea></affiliation><affiliation wicri:level="1"><nlm:aff id="I8">Department of Mental Health, School of Medicine, Moi University College of Health Sciences, P.O. Box 4606, Eldoret, 30100, Kenya</nlm:aff><country xml:lang="fr">Kenya</country><wicri:regionArea>Department of Mental Health, School of Medicine, Moi University College of Health Sciences, P.O. Box 4606, Eldoret, 30100</wicri:regionArea></affiliation></author><author><name sortKey="Ayaya, Samuel" sort="Ayaya, Samuel" uniqKey="Ayaya S" first="Samuel" last="Ayaya">Samuel Ayaya</name><affiliation wicri:level="1"><nlm:aff id="I2">USAID - Academic Model Providing Access to Healthcare (AMPATH) Partnership, P.O. Box 4606, Eldoret, 30100, Kenya</nlm:aff><country xml:lang="fr">Kenya</country><wicri:regionArea>USAID - Academic Model Providing Access to Healthcare (AMPATH) Partnership, P.O. Box 4606, Eldoret, 30100</wicri:regionArea></affiliation><affiliation wicri:level="1"><nlm:aff id="I7">Department of Child Health and Paediatrics, School of Medicine, Moi University College of Health Sciences, P.O. Box 4606, Eldoret, 30100, Kenya</nlm:aff><country xml:lang="fr">Kenya</country><wicri:regionArea>Department of Child Health and Paediatrics, School of Medicine, Moi University College of Health Sciences, P.O. Box 4606, Eldoret, 30100</wicri:regionArea></affiliation></author><author><name sortKey="Gisore, Peter" sort="Gisore, Peter" uniqKey="Gisore P" first="Peter" last="Gisore">Peter Gisore</name><affiliation wicri:level="1"><nlm:aff id="I2">USAID - Academic Model Providing Access to Healthcare (AMPATH) Partnership, P.O. Box 4606, Eldoret, 30100, Kenya</nlm:aff><country xml:lang="fr">Kenya</country><wicri:regionArea>USAID - Academic Model Providing Access to Healthcare (AMPATH) Partnership, P.O. Box 4606, Eldoret, 30100</wicri:regionArea></affiliation><affiliation wicri:level="1"><nlm:aff id="I7">Department of Child Health and Paediatrics, School of Medicine, Moi University College of Health Sciences, P.O. Box 4606, Eldoret, 30100, Kenya</nlm:aff><country xml:lang="fr">Kenya</country><wicri:regionArea>Department of Child Health and Paediatrics, School of Medicine, Moi University College of Health Sciences, P.O. Box 4606, Eldoret, 30100</wicri:regionArea></affiliation></author><author><name sortKey="Scanlon, Michael" sort="Scanlon, Michael" uniqKey="Scanlon M" first="Michael" last="Scanlon">Michael Scanlon</name><affiliation wicri:level="1"><nlm:aff id="I1">Department of Pediatrics, Indiana University School of Medicine, 705 Riley Hospital Drive, Room 5900, Indianapolis, IN, 46202, USA</nlm:aff><country xml:lang="fr">États-Unis</country><wicri:regionArea>Department of Pediatrics, Indiana University School of Medicine, 705 Riley Hospital Drive, Room 5900, Indianapolis, IN, 46202</wicri:regionArea></affiliation></author><author><name sortKey="Braitstein, Paula" sort="Braitstein, Paula" uniqKey="Braitstein P" first="Paula" last="Braitstein">Paula Braitstein</name><affiliation wicri:level="1"><nlm:aff id="I2">USAID - Academic Model Providing Access to Healthcare (AMPATH) Partnership, P.O. Box 4606, Eldoret, 30100, Kenya</nlm:aff><country xml:lang="fr">Kenya</country><wicri:regionArea>USAID - Academic Model Providing Access to Healthcare (AMPATH) Partnership, P.O. Box 4606, Eldoret, 30100</wicri:regionArea></affiliation><affiliation wicri:level="1"><nlm:aff id="I3">Regenstrief Institute, Inc., 410 W. 10th St., Suite 2000, Indianapolis, IN, 46202-3012, USA</nlm:aff><country xml:lang="fr">États-Unis</country><wicri:regionArea>Regenstrief Institute, Inc., 410 W. 10th St., Suite 2000, Indianapolis, IN, 46202-3012</wicri:regionArea></affiliation><affiliation wicri:level="1"><nlm:aff id="I9">Department of Medicine, Indiana University School of Medicine, 545 Barnhill Drive, EH 317, Indianapolis, IN, 46202, USA</nlm:aff><country xml:lang="fr">États-Unis</country><wicri:regionArea>Department of Medicine, Indiana University School of Medicine, 545 Barnhill Drive, EH 317, Indianapolis, IN, 46202</wicri:regionArea></affiliation></author></analytic><series><title level="j">BMC Medical Ethics</title><idno type="eISSN">1472-6939</idno><imprint><date when="2012">2012</date></imprint></series></biblStruct></sourceDesc></fileDesc><profileDesc><textClass></textClass></profileDesc></teiHeader><front><div type="abstract" xml:lang="en"><sec><title>Background</title><p>International collaborators face challenges in the design and implementation of ethical biomedical research. Evaluating community understanding of research and processes like informed consent may enable researchers to better protect research participants in a particular setting; however, there exist few studies examining community perspectives in health research, particularly in resource-limited settings, or strategies for engaging the community in research processes. Our goal was to inform ethical research practice in a biomedical research setting in western Kenya and similar resource-limited settings.</p></sec><sec><title>Methods</title><p>We sought to use <italic>mabaraza</italic>, traditional East African community assemblies, in a qualitative study to understand community perspectives on biomedical research and informed consent within a collaborative, multinational research network in western Kenya. Analyses included manual, progressive coding of transcripts from <italic>mabaraza</italic> to identify emerging central concepts.</p></sec><sec><title>Results</title><p>Our findings from two <italic>mabaraza</italic> with 108 community members revealed that, while participants understood some principles of biomedical research, they emphasized perceived benefits from participation in research over potential risks. Many community members equated health research with HIV testing or care, which may be explained in part by the setting of this particular study. In addition to valuing informed consent as understanding and accepting a role in research activities, participants endorsed an increased role for the community in making decisions about research participation, especially in the case of children, through a process of community consent.</p></sec><sec><title>Conclusions</title><p>Our study suggests that international biomedical research must account for community understanding of research and informed consent, particularly when involving children. Moreover, traditional community forums, such as <italic>mabaraza</italic> in East Africa, can be used effectively to gather these data and may serve as a forum to further engage communities in community consent and other aspects of research.</p></sec></div></front><back><div1 type="bibliography"><listBibl><biblStruct><analytic><author><name sortKey="Varmus, H" uniqKey="Varmus H">H Varmus</name></author><author><name sortKey="Satcher, D" uniqKey="Satcher D">D Satcher</name></author></analytic></biblStruct><biblStruct><analytic><author><name sortKey="Shapiro, Ht" uniqKey="Shapiro H">HT Shapiro</name></author><author><name sortKey="Meslin, Em" uniqKey="Meslin E">EM Meslin</name></author></analytic></biblStruct><biblStruct><analytic><author><name sortKey="Benatar, Sr" uniqKey="Benatar S">SR Benatar</name></author><author><name sortKey="Singer, Pa" uniqKey="Singer P">PA Singer</name></author></analytic></biblStruct><biblStruct><analytic><author><name sortKey="Hutton, Jl" uniqKey="Hutton 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<front><journal-meta><journal-id journal-id-type="nlm-ta">BMC Med Ethics</journal-id><journal-id journal-id-type="iso-abbrev">BMC Med Ethics</journal-id><journal-title-group><journal-title>BMC Medical Ethics</journal-title></journal-title-group><issn pub-type="epub">1472-6939</issn><publisher><publisher-name>BioMed Central</publisher-name></publisher></journal-meta><article-meta><article-id pub-id-type="pmid">23009744</article-id><article-id pub-id-type="pmc">3515354</article-id><article-id pub-id-type="publisher-id">1472-6939-13-23</article-id><article-id pub-id-type="doi">10.1186/1472-6939-13-23</article-id><article-categories><subj-group subj-group-type="heading"><subject>Research Article</subject></subj-group></article-categories><title-group><article-title>A qualitative study using traditional community assemblies to investigate community perspectives on informed consent and research participation in western Kenya</article-title></title-group><contrib-group><contrib contrib-type="author" corresp="yes" id="A1"><name><surname>Vreeman</surname><given-names>Rachel</given-names></name><xref ref-type="aff" rid="I1">1</xref><xref ref-type="aff" rid="I2">2</xref><xref ref-type="aff" rid="I3">3</xref><xref ref-type="aff" rid="I10">10</xref><email>rvreeman@iupui.edu</email></contrib><contrib contrib-type="author" id="A2"><name><surname>Kamaara</surname><given-names>Eunice</given-names></name><xref ref-type="aff" rid="I4">4</xref><email>ekamaara@gmail.com</email></contrib><contrib contrib-type="author" id="A3"><name><surname>Kamanda</surname><given-names>Allan</given-names></name><xref ref-type="aff" rid="I5">5</xref><email>akamanda1@hotmail.com</email></contrib><contrib contrib-type="author" id="A4"><name><surname>Ayuku</surname><given-names>David</given-names></name><xref ref-type="aff" rid="I6">6</xref><email>dayuku_2000@yahoo.com</email></contrib><contrib contrib-type="author" id="A5"><name><surname>Nyandiko</surname><given-names>Winstone</given-names></name><xref ref-type="aff" rid="I2">2</xref><xref ref-type="aff" rid="I7">7</xref><email>nyandikom@yahoo.com</email></contrib><contrib contrib-type="author" id="A6"><name><surname>Atwoli</surname><given-names>Lukoye</given-names></name><xref ref-type="aff" rid="I2">2</xref><xref ref-type="aff" rid="I8">8</xref><email>lukoye@gmail.com</email></contrib><contrib contrib-type="author" id="A7"><name><surname>Ayaya</surname><given-names>Samuel</given-names></name><xref ref-type="aff" rid="I2">2</xref><xref ref-type="aff" rid="I7">7</xref><email>samuel.ayaya@yahoo.com</email></contrib><contrib contrib-type="author" id="A8"><name><surname>Gisore</surname><given-names>Peter</given-names></name><xref ref-type="aff" rid="I2">2</xref><xref ref-type="aff" rid="I7">7</xref><email>gisore2007@gmail.com</email></contrib><contrib contrib-type="author" id="A9"><name><surname>Scanlon</surname><given-names>Michael</given-names></name><xref ref-type="aff" rid="I1">1</xref><email>mscanlon@iupui.edu</email></contrib><contrib contrib-type="author" id="A10"><name><surname>Braitstein</surname><given-names>Paula</given-names></name><xref ref-type="aff" rid="I2">2</xref><xref ref-type="aff" rid="I3">3</xref><xref ref-type="aff" rid="I9">9</xref><email>pbraitstein@yahoo.com</email></contrib></contrib-group><aff id="I1"><label>1</label>Department of Pediatrics, Indiana University School of Medicine, 705 Riley Hospital Drive, Room 5900, Indianapolis, IN, 46202, USA</aff><aff id="I2"><label>2</label>USAID - Academic Model Providing Access to Healthcare (AMPATH) Partnership, P.O. Box 4606, Eldoret, 30100, Kenya</aff><aff id="I3"><label>3</label>Regenstrief Institute, Inc., 410 W. 10th St., Suite 2000, Indianapolis, IN, 46202-3012, USA</aff><aff id="I4"><label>4</label>Departments of Philosophy and Religious Studies, Moi University, P.O. Box 3990, Eldoret, 30100, Kenya</aff><aff id="I5"><label>5</label>Moi Teaching and Referral Hospital, Nandi Road, P.O. Box 3, Eldoret, 30100, Kenya</aff><aff id="I6"><label>6</label>Department of Behavioural Sciences, School of Medicine, Moi University College of Health Sciences, P.O. Box 4606, Eldoret, 30100, Kenya</aff><aff id="I7"><label>7</label>Department of Child Health and Paediatrics, School of Medicine, Moi University College of Health Sciences, P.O. Box 4606, Eldoret, 30100, Kenya</aff><aff id="I8"><label>8</label>Department of Mental Health, School of Medicine, Moi University College of Health Sciences, P.O. Box 4606, Eldoret, 30100, Kenya</aff><aff id="I9"><label>9</label>Department of Medicine, Indiana University School of Medicine, 545 Barnhill Drive, EH 317, Indianapolis, IN, 46202, USA</aff><aff id="I10"><label>10</label>Children’s Health Services Research, Health Information and Translational Sciences Building, Suite #1000, 410 W. 10th St., Indianapolis, IN, 46202, USA</aff><pub-date pub-type="collection"><year>2012</year></pub-date><pub-date pub-type="epub"><day>25</day><month>9</month><year>2012</year></pub-date><volume>13</volume><fpage>23</fpage><lpage>23</lpage><history><date date-type="received"><day>19</day><month>6</month><year>2012</year></date><date date-type="accepted"><day>3</day><month>9</month><year>2012</year></date></history><permissions><copyright-statement>Copyright ©2012 Vreeman et al.; licensee BioMed Central Ltd.</copyright-statement><copyright-year>2012</copyright-year><copyright-holder>Vreeman et al.; licensee BioMed Central Ltd.</copyright-holder><license license-type="open-access" xlink:href="http://creativecommons.org/licenses/by/2.0"><license-p>This is an Open Access article distributed under the terms of the Creative Commons Attribution License (<ext-link ext-link-type="uri" xlink:href="http://creativecommons.org/licenses/by/2.0">http://creativecommons.org/licenses/by/2.0</ext-link>), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.</license-p></license></permissions><self-uri xlink:href="http://www.biomedcentral.com/1472-6939/13/23"></self-uri><abstract><sec><title>Background</title><p>International collaborators face challenges in the design and implementation of ethical biomedical research. Evaluating community understanding of research and processes like informed consent may enable researchers to better protect research participants in a particular setting; however, there exist few studies examining community perspectives in health research, particularly in resource-limited settings, or strategies for engaging the community in research processes. Our goal was to inform ethical research practice in a biomedical research setting in western Kenya and similar resource-limited settings.</p></sec><sec><title>Methods</title><p>We sought to use <italic>mabaraza</italic>, traditional East African community assemblies, in a qualitative study to understand community perspectives on biomedical research and informed consent within a collaborative, multinational research network in western Kenya. Analyses included manual, progressive coding of transcripts from <italic>mabaraza</italic> to identify emerging central concepts.</p></sec><sec><title>Results</title><p>Our findings from two <italic>mabaraza</italic> with 108 community members revealed that, while participants understood some principles of biomedical research, they emphasized perceived benefits from participation in research over potential risks. Many community members equated health research with HIV testing or care, which may be explained in part by the setting of this particular study. In addition to valuing informed consent as understanding and accepting a role in research activities, participants endorsed an increased role for the community in making decisions about research participation, especially in the case of children, through a process of community consent.</p></sec><sec><title>Conclusions</title><p>Our study suggests that international biomedical research must account for community understanding of research and informed consent, particularly when involving children. Moreover, traditional community forums, such as <italic>mabaraza</italic> in East Africa, can be used effectively to gather these data and may serve as a forum to further engage communities in community consent and other aspects of research.</p></sec></abstract><kwd-group><kwd>Community-based research</kwd><kwd>Sub-Saharan Africa</kwd><kwd>Ethics</kwd><kwd>Informed consent</kwd><kwd>Kenya</kwd></kwd-group></article-meta></front></pmc></record>Pour manipuler ce document sous Unix (Dilib)
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HfdIndexSelect -h $EXPLOR_AREA/Data/Pmc/Curation/RBID.i -Sk "pubmed:23009744" \
| HfdSelect -Kh $EXPLOR_AREA/Data/Pmc/Curation/biblio.hfd \
| NlmPubMed2Wicri -a SidaSubSaharaV1
| This area was generated with Dilib version V0.6.32. |  |