Community engagement and ethical global health research

References

• Abelson, J., Forest, P. G., Eyles, J., Smith, P., Martin, E., & Gauvin, F. P. (2003). Deliberations about deliberative methods: Issues in the design and evaluation of public participation processes. Social Science & Medicine (1982), 57, 239–251. doi: 10.1016/S0277-9536(02)00343-X
   PubMed Web of Science ®Google Scholar
• Adhikari, B., James, N., Newby, G., von Seidlein, L., White, N. J., Day, N. P., … Cheah, P. Y. (2016). Community engagement and population coverage in mass anti-malarial administrations: A systematic literature review. Malaria Journal, 15, 523. doi: 10.1186/s12936-016-1593-y
   PubMed Web of Science ®Google Scholar
• Adhikari, B., Pell, C., Phommasone, K., Soundala, X., Kommarasy, P., Pongvongsa, T., … Cheah, P. Y. (2017). Elements of effective community engagement: Lessons from a targeted malaria elimination study in Lao PDR (Laos). Global Health Action, 10, 1366136. doi: 10.1080/16549716.2017.1366136
   PubMed Web of Science ®Google Scholar
• Adhikari, B., Phommasone, K., Kommarasy, P., Soundala, X., Souvanthong, P., Pongvongsa, T., … Day, N. P. J. (2018). Why do people participate in mass anti-malarial administration? Findings from a qualitative study in Nong District, Savannakhet Province, Lao PDR (Laos). Malaria Journal, 17, 15. doi: 10.1186/s12936-017-2158-4
   PubMed Web of Science ®Google Scholar
• Adhikari, B., Phommasone, K., Pongvongsa, T., Kommarasy, P., Soundala, X., Henriques, G., … von Seidlein, L. (2017). Factors associated with population coverage of targeted malaria elimination (TME) in southern Savannakhet Province, Lao PDR. Malaria Journal, 16, 424. doi: 10.1186/s12936-017-2070-y
   PubMed Web of Science ®Google Scholar
• Adhikari, B., Vincent, R., Wong, G., Duddy, C., Richardson, E., Lavery, J. V., & Molyneux, S. (2019). A realist review of community engagement with health research. Wellcome Open Research, 4, 87. doi: 10.12688/wellcomeopenres.15298.1
   PubMedGoogle Scholar
• Angwenyi, V., Kamuya, D., Mwachiro, D., Kalama, B., Marsh, V., Njuguna, P., & Molyneux, S. (2014). Complex realities: Community engagement for a paediatric randomized controlled malaria vaccine trial in Kilifi, Kenya. Trials, 15, 65. doi: 10.1186/1745-6215-15-65
   PubMedGoogle Scholar
• Appelbaum, P. S., Anatchkova, M., Albert, K., Dunn, L. B., & Lidz, C. W. (2012). Therapeutic misconception in research subjects: Development and validation of a measure. Clinical Trials (london, England), 9, 748–761. doi: 10.1177/1740774512456455
   PubMed Web of Science ®Google Scholar
• Black, G. F., Davies, A., Iskander, D., & Chambers, M. (2018). Reflections on the ethics of participatory visual methods to engage communities in global health research. Glob Bioeth, 29, 22–38. doi: 10.1080/11287462.2017.1415722
   PubMedGoogle Scholar
• Boal, A. J. C. A., & McBride, M.-O. L. (1985). Theatre of the Oppressed, trans.
   Google Scholar
• Bull, S., & Lindegger, G. C. (2011). Ensuring consent to research is voluntary: How far do we need to go? American Journal of Bioethics, 11, 27–29. doi: 10.1080/15265161.2011.585272
   PubMed Web of Science ®Google Scholar
• Cheah, P. Y., Lwin, K. M., Phaiphun, L., Maelankiri, L., Parker, M., Day, N. P., … Nosten, F. (2010). Community engagement on the Thai-Burmese border: Rationale, experience and lessons learnt. International Health, 2, 123–129. doi: 10.1016/j.inhe.2010.02.001
   PubMed Web of Science ®Google Scholar
• Cheah, P. Y., & White, N. J. (2016). Antimalarial mass drug administration: Ethical considerations. International Health, 8, 235–238. doi: 10.1093/inthealth/ihw027
   PubMed Web of Science ®Google Scholar
• CIOMS: International Ethical Guidelines for Health-Related Research Involving Humans. (2016). https://cioms.ch/wp-content/uploads/2017/01/WEB-CIOMS-EthicalGuidelines.pdf.
   Google Scholar
• Clinical and Translational Science Award (CTSA). Principles of Community Engagement. NIH Publication No 11-7782 2011, 2nd edition.
   Google Scholar
• Dickert, N., & Sugarman, J. (2005). Ethical goals of community consultation in research. American Journal of Public Health, 95, 1123–1127. doi: 10.2105/AJPH.2004.058933
   PubMed Web of Science ®Google Scholar
• Emanuel, E. J., Currie, X. E., Herman, A., & Project, P. (2005). Undue inducement in clinical research in developing countries: Is it a worry? Lancet, 366, 336–340. doi: 10.1016/S0140-6736(05)66992-9
   PubMed Web of Science ®Google Scholar
• Emanuel, E. J., Wendler, D., Killen, J., & Grady, C. (2004). What makes clinical research in developing countries ethical? The benchmarks of ethical research. Journal of Infectious Diseases, 189, 930–937. doi: 10.1086/381709
   PubMed Web of Science ®Google Scholar
• Fitzpatrick, E. F. M., Macdonald, G., Martiniuk, A. L. C., D’Antoine, H., Oscar, J., Carter, M., … Elliott, E. J. (2017). The Picture Talk project: Starting a Conversation with Community Leaders on Research with Remote Aboriginal Communities of Australia. BMC Medical Ethics, 18, 34. doi: 10.1186/s12910-017-0191-z
   PubMed Web of Science ®Google Scholar
• Fletcher, B., Gheorghe, A., Moore, D., Wilson, S., & Damery, S. (2012). Improving the recruitment activity of clinicians in randomised controlled trials: A systematic review. BMJ Open, 2, e000496. doi: 10.1136/bmjopen-2011-000496
   PubMed Web of Science ®Google Scholar
• Geissler, P. W., Kelly, A., Imoukhuede, B., & Pool, R. (2008). ‘He is now like a brother, I can even give him some blood’ – relational ethics and material exchanges in a malaria vaccine ‘trial community’ in The Gambia. Social Science & Medicine (1982), 67, 696–707. doi: 10.1016/j.socscimed.2008.02.004
   PubMed Web of Science ®Google Scholar
• Geissler, P. W., & Pool, R. (2006). Editorial: Popular concerns about medical research projects in sub-Saharan Africa–a critical voice in debates about medical research ethics. Tropical Medicine & International Health, 11, 975–982. doi: 10.1111/j.1365-3156.2006.01682.x
   PubMed Web of Science ®Google Scholar
• Gelinas, L., Largent, E. A., Cohen, I. G., Kornetsky, S., Bierer, B. E., & Fernandez Lynch, H. (2018).: A Framework for Ethical Payment to Research Participants. New England Journal of Medicine, 378, 766–771. doi: 10.1056/NEJMsb1710591
   PubMed Web of Science ®Google Scholar
• Habib, M. A., Soofi, S., Cousens, S., Anwar, S., Haque, N. U., Ahmed, I., … Bhutta, Z. A. (2017). Community engagement and integrated health and polio immunisation campaigns in conflict-affected areas of Pakistan: A cluster randomised controlled trial. The Lancet. Global Health, 5, e593–e603. doi: 10.1016/S2214-109X(17)30184-5
   PubMed Web of Science ®Google Scholar
• ICH Harmonized Guideline: Integrated Addendum to ICH E6 (R1). (2016). Guideline for good clinical practice. http://www.ich.org/fileadmin/Public_Web_Site/ICH_Products/Guidelines/Efficacy/E6/E6_R2__Step_4_2016_1109.pdf.
   Google Scholar
• Kaehler, N., Adhikari, B., Cheah, P. Y., Day, N. P. J., Paris, D. H., Tanner, M., & Pell, C. (2019). The promise, problems and pitfalls of mass drug administration for malaria elimination: A qualitative study with scientists and policymakers. International Health, 11(3), 166–176. doi: 10.1093/inthealth/ihy079
   PubMed Web of Science ®Google Scholar
• Kajeechiwa, L., Thwin, M. M., Nosten, S., Tun, S. W., Parker, D., von Seidlein, L., … Cheah, P. Y. (2017). Community engagement for the rapid elimination of malaria: The case of Kayin state, Myanmar. Wellcome Open Research, 2, 59. doi: 10.12688/wellcomeopenres.12051.1
   PubMedGoogle Scholar
• Kajeechiwa, L., Thwin, M. M., Shee, P. W., Yee, N. L., Elvina, E., Peapah, P., … Min, J. R. (2016). The acceptability of mass administrations of anti-malarial drugs as part of targeted malaria elimination in villages along the Thai-Myanmar border. Malaria Journal, 15, 494. doi: 10.1186/s12936-016-1528-7
   PubMed Web of Science ®Google Scholar
• Kamuya, D. M., Marsh, V., Kombe, F. K., Geissler, P. W., & Molyneux, S. C. (2013). Engaging communities to strengthen research ethics in low-income settings: Selection and perceptions of members of a network of representatives in coastal Kenya. Developing World Bioethics, 13, 10–20. doi: 10.1111/dewb.12014
   PubMed Web of Science ®Google Scholar
• King, K. F., Kolopack, P., Merritt, M. W., & Lavery, J. V. (2014). Community engagement and the human infrastructure of global health research. BMC Medical Ethics, 15, 84. doi: 10.1186/1472-6939-15-84
   PubMed Web of Science ®Google Scholar
• Koen, J., Essack, Z., Slack, C., Lindegger, G., & Newman, P. A. (2013).: ‘It looks like you just want them when things get rough’: Civil society perspectives on negative trial results and stakeholder engagement in HIV prevention trials. Developing World Bioethics, 13, 138–148. doi: 10.1111/j.1471-8847.2012.00338.x
   PubMed Web of Science ®Google Scholar
• König, A., Kajeechiwa, L., Thwin, M., Nosten, S., Tun, S., Tangseefa, D., & Nosten, F. (2018). Community engagement for malaria elimination in contested areas of the Karen/Kayin State, Myanmar: A case study on the Malaria Elimination Task Force [version 1; referees: 2 approved with reservations]. 3.
   Google Scholar
• Lavery, J. V. (2004). Putting international research ethics guidelines to work for the benefit of developing countries. Yale Journal of Health Policy, Law, and Ethics, 4, 319–336.
   PubMedGoogle Scholar
• Lavery, J. V. (2018). Building an evidence base for stakeholder engagement. Science, 361, 554–556. doi: 10.1126/science.aat8429
   PubMed Web of Science ®Google Scholar
• Lim, R., Peto, T. J., Tripura, R., & Cheah, P. Y. (2016). Village Drama Against Malaria. Lancet, 388, 2990. doi: 10.1016/S0140-6736(16)32519-3
   PubMed Web of Science ®Google Scholar
• Luna, F. (2009). Elucidating the concept of vulnerability: Layers not labels. IJFAB: International Journal of Feminist Approaches to Bioethics, 2, 121–139.
   Google Scholar
• MacQueen, K. M., Bhan, A., Frohlich, J., Holzer, J., & Sugarman, J. (2015). Ethics Working Group of the HIVPTN: Evaluating community engagement in global health research: The need for metrics. BMC Medical Ethics, 16, 44. doi: 10.1186/s12910-015-0033-9
   PubMed Web of Science ®Google Scholar
• Marsh, V. M., Kamuya, D. K., Parker, M. J., & Molyneux, C. S. (2011). Working with concepts: The role of community in International Collaborative Biomedical Research. Public Health Ethics, 4, 26–39. doi: 10.1093/phe/phr007
   PubMed Web of Science ®Google Scholar
• Marsh, V., Kamuya, D., Rowa, Y., Gikonyo, C., & Molyneux, S. (2008). Beginning community engagement at a busy biomedical research programme: Experiences from the KEMRI CGMRC-Wellcome Trust Research Programme, Kilifi, Kenya. Social Science & Medicine (1982), 67, 721–733. doi: 10.1016/j.socscimed.2008.02.007
   PubMed Web of Science ®Google Scholar
• Masquillier, C., Wouters, E., Mortelmans, D., & le Roux Booysen, F. (2015). The impact of community support initiatives on the stigma experienced by people living with HIV/AIDS in South Africa. AIDS and Behavior, 19, 214–226. doi: 10.1007/s10461-014-0865-1
   PubMed Web of Science ®Google Scholar
• Mechanic, D., & Tanner, J. (2007). Vulnerable people, groups, and populations: Societal view. Health Aff (Millwood), 26, 1220–1230. doi: 10.1377/hlthaff.26.5.1220
   PubMed Web of Science ®Google Scholar
• Mills, E. J., Singh, S., Singh, J. A., Orbinski, J. J., Warren, M., & Upshur, R. E. (2005). Designing research in vulnerable populations: Lessons from HIV prevention trials that stopped early. BMJ, 331, 1403–1406. doi: 10.1136/bmj.331.7529.1403
   PubMed Web of Science ®Google Scholar
• Molyneux, C. S., Peshu, N., & Marsh, K. (2005). Trust and informed consent: Insights from community members on the Kenyan coast. Social Science & Medicine (1982), 61, 1463–1473. doi: 10.1016/j.socscimed.2004.11.073
   PubMed Web of Science ®Google Scholar
• Morin, S. F., Morfit, S., Maiorana, A., Aramrattana, A., Goicochea, P., Mutsambi, J. M., … Richards, T. A. (2008). Building community partnerships: Case studies of Community Advisory Boards at research sites in Peru, Zimbabwe, and Thailand. Clinical Trials (london, England), 5, 147–156. doi: 10.1177/1740774508090211
   PubMed Web of Science ®Google Scholar
• National Institute for Health Research. (2012). INVOLVE Briefing notes for researchers: public involvement in NHS, public health and social care research. http://www.invo.org.uk/wp-content/uploads/2014/11/9938_INVOLVE_Briefing_Notes_WEB.pdf.
   Google Scholar
• Newby, G., Hwang, J., Koita, K., Chen, I., Greenwood, B., von Seidlein, L., … Wegbreit, J. (2015). Review of mass drug administration for malaria and its operational challenges. American Journal of Tropical Medicine and Hygiene, 93, 125–134. doi: 10.4269/ajtmh.14-0254
   PubMed Web of Science ®Google Scholar
• Newman, P. A., Rubincam, C., Slack, C., Essack, Z., Chakrapani, V., Chuang, D. M., … Logie, C. (2015). Towards a science of community stakeholder engagement in biomedical HIV prevention trials: An embedded four-country case study. PLoS One, 10, e0135937. doi: 10.1371/journal.pone.0135937
   PubMed Web of Science ®Google Scholar
• Nguon, C., Dysoley, L., Davoeung, C., Sovann, Y., Sanann, N., Sareth, M., … Kol, K. (2018). Art and theatre for health in rural Cambodia. Glob Bioeth, 29, 16–21. doi: 10.1080/11287462.2017.1411762
   PubMedGoogle Scholar
• Nuffield Council on Bioethics. (2000). The ethics of research related to healthcare in developing countries. http://nuffieldbioethics.org/wp-content/uploads/2014/07/Ethics-of-research-related-to-healthcare-in-developing-countries-I.pdf.
   Google Scholar
• Nyblade, L., Singh, S., Ashburn, K., Brady, L., & Olenja, J. (2011). “Once I begin to participate, people will run away from me”: Understanding stigma as a barrier to HIV vaccine research participation in Kenya. Vaccine, 29, 8924–8928. doi: 10.1016/j.vaccine.2011.09.067
   PubMed Web of Science ®Google Scholar
• O’Donovan, J., Thompson, A., Onyilofor, C., Hand, T., Rosseau, N., & O’Neil, E. (2019). The use of participatory visual methods with community health workers: A systematic scoping review of the literature. Global Public Health, 14(5), 722–736. doi: 10.1080/17441692.2018.1536156
   PubMed Web of Science ®Google Scholar
• Parker, D. M., Carrara, V. I., Pukrittayakamee, S., McGready, R., & Nosten, F. H. (2015). Malaria ecology along the Thailand-Myanmar border. Malaria Journal, 14, 388. doi: 10.1186/s12936-015-0921-y
   PubMed Web of Science ®Google Scholar
• Participants in the Community Engagement and Consent Workshop, Kilifi, Kenya, March 2011. (2013). Consent and community engagement in diverse research contexts. Journal of Empirical Research. on Human Research Ethics, 8, 1–18.
   Web of Science ®Google Scholar
• Pell, C. L., Adhikari, B., Myo Thwin, M., Kajeechiwa, L., Nosten, S., Nosten, F. H., … Hien, T. T. (2019). Community engagement, social context and coverage of mass anti-malarial administration: Comparative findings from multi-site research in the greater Mekong sub-region. PLoS One, 14, e0214280. doi: 10.1371/journal.pone.0214280
   PubMed Web of Science ®Google Scholar
• Peto, T. J., Debackere, M., Etienne, W., Vernaeve, L., Tripura, R., Falq, G., … von Seidlein, L. (2018). Community participation during two mass anti-malarial administrations in Cambodia: Lessons from a joint workshop. Malaria Journal, 17, 53. doi: 10.1186/s12936-018-2202-z
   PubMed Web of Science ®Google Scholar
• Peto, T. J., Tripura, R., Davoeung, C., Nguon, C., Nou, S., Heng, C., … James, N. (2018). Reflections on a community engagement strategy for Mass Antimalarial Drug Administration in Cambodia. American Journal of Tropical Medicine and Hygiene, 98, 100–104. doi: 10.4269/ajtmh.17-0428
   PubMed Web of Science ®Google Scholar
• Pratt, B., Zion, D., Lwin, K. M., Cheah, P. Y., Nosten, F., & Loff, B. (2013). Ancillary Care: From theory to practice in International Clinical Research. Public Health Ethics, 6, 154–169. doi: 10.1093/phe/pht015
   PubMed Web of Science ®Google Scholar
• Rubincam, C., Lacombe-Duncan, A., & Newman, P. A. (2016). Taking culture seriously in biomedical HIV prevention trials: A meta-synthesis of qualitative studies. Expert Review of Vaccines, 15, 331–347. doi: 10.1586/14760584.2016.1118349
   PubMed Web of Science ®Google Scholar
• Sahan, K., Pell, C., Smithuis, F., Phyo, A. K., Maung, S. M., Indrasuta, C., … Cheah, P. Y. (2017). Community engagement and the social context of targeted malaria treatment: A qualitative study in Kayin (Karen) state, Myanmar. Malaria Journal, 16, 75. doi: 10.1186/s12936-017-1718-y
   PubMed Web of Science ®Google Scholar
• Slack, C., Thabethe, S., Lindegger, G., Matandika, L., Newman, P. A., Kerr, P., … Bekker, L. G. (2016). ... i’ve gone through this my own self, so I practice what I preach ... . Journal of Empirical Research. on Human Research Ethics, 11, 322–333. doi: 10.1177/1556264616675202
   PubMed Web of Science ®Google Scholar
• Tangseefa, D., Monthathip, K., Tuenpakdee, N., König, A., Kajeechiwa, L., Thwin, M., … Hashmi, A. (2018). ?Nine dimensions?: A multidisciplinary approach for community engagement in a complex postwar border region as part of the targeted malaria elimination in Karen/Kayin State, Myanmar [version 1; referees: 2 approved]. 3.
   Google Scholar
• Tindana, P. O., Singh, J. A., Tracy, C. S., Upshur, R. E., Daar, A. S., Singer, P. A., … Lavery, J. V. (2007). Grand challenges in global health: Community engagement in research in developing countries. PLoS Medicine, 4, e273. doi: 10.1371/journal.pmed.0040273
   PubMed Web of Science ®Google Scholar
• van Delden, J. J., & van der Graaf, R. (2017). Revised CIOMS International Ethical Guidelines for health-related research involving humans. JAMA, 317(2), 135–136. doi: 10.1001/jama.2016.18977
   PubMed Web of Science ®Google Scholar
• von Seidlein, L., & Dondorp, A. (2015). Fighting fire with fire: Mass antimalarial drug administrations in an era of antimalarial resistance. Expert Review of Anti-Infective Therapy, 13, 715–730. doi: 10.1586/14787210.2015.1031744
   PubMed Web of Science ®Google Scholar
• Wallerstein, N., & Duran, B. (2010). Community-based participatory research contributions to intervention research: The intersection of science and practice to improve health equity. American Journal of Public Health, 100(Suppl 1), S40–S46. doi: 10.2105/AJPH.2009.184036
   PubMed Web of Science ®Google Scholar
• White, L. (2000). Speaking with vampires: Rumor and history in colonial Africa. Berkeley, CA: Univ of California Press.
   Google Scholar
• Wilkinson, A., Parker, M., Martineau, F., & Leach, M. (2017). Engaging ‘communities’: Anthropological insights from the West African Ebola epidemic. Philosophical Transactions of the Royal Society of London B Biological Sciences, 372(1721), pii: 20160305. doi: 10.1098/rstb.2016.0305
   Web of Science ®Google Scholar
• Williams, W. W., Lu, P. J., O’Halloran, A., Kim, D. K., Grohskopf, L. A., Pilishvili, T., … Markowitz, L. E. (2016). Surveillance of vaccination coverage among adult populations – United States, 2014. MMWR. Surveillance Summaries, 65, 1–36. doi: 10.15585/mmwr.ss6501a1
   PubMed Web of Science ®Google Scholar