Increased research literacy to facilitate community ownership of health research in low and middle income countries

References

• Ballantyne, A. (2008). Benefits to research subjects in international trials: Do they reduce exploitation or increase undue inducement? Developing World Bioethics, 8(3), 178–191. doi:10.1111/dewb.2008.8.issue-3
   PubMed Web of Science ®Google Scholar
• Benatar, S. R. (2000). Avoiding exploitation in clinical research. Cambridge Quarterly of Healthcare Ethics, 9, 562–565. doi:10.1017/S096318010000414X
   PubMed Web of Science ®Google Scholar
• Benatar, S. R. (2002). Reflections and recommendations on research ethics in LMIC. Social Science and Medicine, 54, 1131–1141. doi:10.1016/S0277-9536(01)00327-6
   PubMed Web of Science ®Google Scholar
• Bhutta, Z. A. (2002). Ethics in international health research: A perspective from the developing world. Bulletin of the World Health Organization, 80(2), 114–120.
   PubMed Web of Science ®Google Scholar
• Board, National Science & Engineering Indicators, 2018. Retrieved July 22, 2019, from https://www.nsf.gov/nsb/
   Google Scholar
• Coats, J. V., Stafford, J. D., Thompson, V. S., Javois, B. J., & Goodman, M. S. (2015). Increasing research literacy: The community research fellows. Journal of Empirical Research on Human Research Ethics, 10(1), 3–12. doi:10.1177/1556264614561959
   PubMed Web of Science ®Google Scholar
• Costello, A., & Zumla, A. (2000). Moving to research partnerships in LMIC. British Medical Journal, 321, 827–829. doi:10.1136/bmj.321.7264.827
   PubMed Web of Science ®Google Scholar
• Council for International Organizations of Medical Sciences. (2000). International ethical guidelines for biomedical research involving human subjects. Geneva, Switzerland: Author.
   Google Scholar
• Council for International Organizations of Medical Sciences. (2000). International ethical guidelines for biomedical research involving human subjects. Geneva, Switzerland: Author.
   Google Scholar
• Council for International Organizations of Medical Sciences (2016). International Ethical Guidelines for HealthrelatedResearch Involving Humans, Fourth Edition. Retrieved from https://cioms.ch/wp-content/uploads/2017/01/WEB-CIOMSEthicalGuidelines.pdf
   Google Scholar
• De Las Nueces, D., Hacker, K., DiGirolamo, A., & Hicks, L. S. (2012). A systematic review of community- based participatory research to enhance clinical trials in racial and ethnic minority groups. Health Services Research, 47(3pt2), 1363–1386. doi:10.1111/j.1475-6773.2012.01386.x
   PubMed Web of Science ®Google Scholar
• De Melo-Martin, I., & Ho, A. (2008). Beyond informed consent: The therapeutic misconception and trust. Journal of Medical Ethics, 34, 202–205. doi:10.1136/jme.2006.019406
   PubMed Web of Science ®Google Scholar
• Emanuel, E. J., Wendler, D., Killen, J., & Grady, C. (2004). What makes clinical research in LMIC ethical? The benchmarks of ethical research. The Journal of Infectious Diseases, 189(5), 930–937. doi:10.1086/381709
   PubMed Web of Science ®Google Scholar
• Fiztgerald, D. W., & Wasunna, A. (2005). Away from exploitation and towards engagement: An ethical compass for medical researchers working in resource-poor countries. Journal of Law, Medicine and Ethics, 33, 555–565.
   Web of Science ®Google Scholar
• Folayan, M. O., Haire, B., Harrison, A., Fatusi, O., & Brown, B. (2014). Beyond informed consent: Ethical considerations in the design and implementation of sexual and reproductive health research among adolescents. African Journal of Reproductive Health, 18(3), 118–126.
   PubMed Web of Science ®Google Scholar
• Foss, A. M., Vickerman, P. T., Heise, L., & Watts, C. H. (2003). Shifts in condom use following microbiocide introduction: Should we be concerned? AIDS, 17, 1227–1237. doi:10.1097/00002030-200305230-00015
   PubMed Web of Science ®Google Scholar
• Fried, E. (2001). The therapeutic misconception, beneficence, and respect. Accountability in Research, 8, 331–348. doi:10.1080/08989620108573984
   PubMedGoogle Scholar
• Gbadegesin, S., & Wendler, A. (2006). Protecting communities in health research from exploitation. Bioethics, 20(5), 248–253. doi:10.1111/j.1467-8519.2006.00501.x
   PubMed Web of Science ®Google Scholar
• Glass, R. I. (2017). Empowering LMIC to direct their own research. Global Health Matters. Retrieved from https://www.fic.nih.gov/News/GlobalHealthMatters/may-june-2017/Pages/empowering-developing-countries-to-direct-research.aspx
   Google Scholar
• Godoy-Ruiz, P., Cole, D. C., Lenters, L., & McKenzie, K. (2016). Developing collaborative approaches to international research: Perspectives of new global health researchers. Global Public Health, 11(3), 253–275. doi:10.1080/17441692.2014.999814
   PubMed Web of Science ®Google Scholar
• Government, U.S.. Henry J Kaiser Family Foundation, (2019). Retrieved September 14, 2019, from https://www.kff.org/global-health-policy/fact-sheet/the-u-sgovernment-and-global-health/
   Google Scholar
• Grady, C. (2006). Ethics of international research: What does responsiveness mean? Ethics Journal of the American Medical Association, 8(4), 235–240.
   Google Scholar
• Hofstede, G. (2010). Culture’s consequences (3rd ed.). London,NY: McGraw Hill Professional.
   Google Scholar
• IJsselmuiden, C. B., M.D., M.P.H., & Faden, R. R., PhD., M.P.H. (1992). Research and informed consent in africa – Another look. The New England Journal of Medicine, 326(12), 830–834. doi:10.1056/NEJM199203193261212
   PubMed Web of Science ®Google Scholar
• Lindegger, G., Milford, C., Slack, C., Quayle, M., Xaba, X., & Vardas, E. (2006). Beyond the checklist. JAIDS Journal of Acquired Immune Deficiency Syndromes, 43(5), 560–566. doi:10.1097/01.qai.0000247225.37752.f5
   PubMed Web of Science ®Google Scholar
• Luchetti, M. (2014). Global health and the 10/90 gap. British Journal of Medical Practitioners, 7(4), 731.
   Google Scholar
• Marshall, P. A. (2006). Informed consent in international health research. Journal of Empirical Research on Human Research Ethics, 1, 25–42. doi:10.1525/jer.2006.1.1.25
   PubMed Web of Science ®Google Scholar
• Mendis, S., Yach, D., Bengoa, R., Narvaez, D., & Zhang, X. (2003). Research gap in cardiovascular disease in LMIC. Lancet, 361(9376), 2246–2247. doi:10.1016/S0140-6736(03)13753-1
   PubMed Web of Science ®Google Scholar
• Molyneux, C. S., Bull, S., Cheah, P. Y., Lwin, K. M., Marsh, V., Parker, M., & Lavery, J. V. (2013). Consent and community engagement in diverse research contexts: Reviewing and developing research and practice. Journal of Empirical Research on Human Research Ethics, 8(4), 1–18. doi:10.1525/jer.2013.8.4.1
   Web of Science ®Google Scholar
• Molyneux, C. S., Peshu, N., & Marsh, K. (2004). Understanding of informed consent in a low-income setting: Three case studies from the Kenyan coast. Social Science and Medicine, 59, 2547–2559. doi:10.1016/j.socscimed.2004.03.037
   PubMed Web of Science ®Google Scholar
• Moodley, K., Pather, M., & Myer, L. (2005). Informed consent and participant perceptions of influenza vaccine trials in South Africa. Journal of Medival Ethics, 31, 727–732. doi:10.1136/jme.2004.009910
   PubMed Web of Science ®Google Scholar
• Nyika, A., Chilengi, R., Ishengoma, D., Mtenga, S., Thera, M. A., Sissoko, M. S., … Kilama, W. L. (2010). Engaging diverse communities participating in clinical trials: Case examples from across Africa. Malaria Journal, 9, 86. doi:10.1186/1475-2875-9-86
   PubMed Web of Science ®Google Scholar
• Okello, G., Jones, C., Bonareri, M., Ndegwa, S. N., Mcharo, C., Kengo, J., & Brooker, S. J. (2013). Challenges for consent and community engagement in the conduct of cluster randomized trial among school children in low income settings: Experiences from Kenya. Biomed Central, 14, 142.
   Google Scholar
• Phiri, M., Gooding, K., Nyirenda, D., Sambakunsi, R., Kumwenda, M. K., & Desmond, N. (2018). “Not just dogs, but rabid dogs”: Tensions and conflicts amongst research volunteers in Malawi. Global Bioethics, 29(1), 65–80. doi:10.1080/11287462.2018.1509925
   PubMedGoogle Scholar
• Powell, L. R. (2016). Conceptualizing, understanding, and assessing research literacy in a diverse population (GSBS Dissertations and Theses). https://doi.org/10.13028/M2KG6H. Retrieved from https://escholarship.umassmed.edu/gsbs_diss/819
   Google Scholar
• Pratt, B., Lwin, K. M., Zion, D., Nosten, F., Loff, B., & Cheah, P. Y. (2015). Exploitation and community engagement: Can community advisory boards successfully assume a role minimizing exploitation in international research? Developing World Bioethics, 15(1), 18–26. doi:10.1111/dewb.12031
   PubMed Web of Science ®Google Scholar
• Sambakunsi, R., Kumwenda, M., Choko, A., Corbett, E. L., & Desmond, N. A. (2015). ‘Whose failure counts?’ A critical reflection on definitions of failure for community health volunteers providing HIV self-testing in a community-based HIV/TB intervention study in urban Malawi. Anthropology and Medicine, 22(3), 234–249. doi:10.1080/13648470.2015.1077202
   PubMed Web of Science ®Google Scholar
• Schroeder, D., Cook, L. J., Fenet, S., & Hirsch, F. (2016) “Ethics dumping” – paradigmatic case studies, a report for TRUST. Retrieved from http://trust-project.eu/deliverables-andtools/
   Google Scholar
• Silverman, H. (2005). Enhancing research ethics capacity: Implications for protection of research subjects, avoiding exploitation and achieving global health. Middle East Fertility Journal, 10(2), 105–109.
   Google Scholar
• Sood, N., & Goldman, D. (2006). HIV breakthroughs and risky sexual behavior. Quarterly Journal of Economics, 121, 1063–1102. doi:10.1162/qjec.121.3.1063
   Web of Science ®Google Scholar
• Tindana, P. O., Singh, J. A., Tracy, C. S., Upshur, R. E. G., Daar, A. S., Singer, P. A., … Lavery, J. V. (2007). Grand challenges in global health: Community engagement in research in LMIC. PLoS Medicine, 4(9), 1451–1455. doi:10.1371/journal.pmed.0040273
   Web of Science ®Google Scholar
• Triandis, H. C. (1995). Individualism and collectivism. Boulder, CO: Westview.
   Google Scholar
• Vidyasagar, D. (2006). Global notes: The 10/90 gap disparities in global health research. Journal of Perinatology, 26(1), 55–56. doi:10.1038/sj.jp.7211402
   PubMed Web of Science ®Google Scholar
• Vignoles, V. L., Owe, E., Becker, M., Smith, P. B., Easterbrook, M. J., Brown, R., … Bond, M. H. (2016). Beyond the “east–West” dichotomy: Global variation in cultural models of selfhood. Journal of Experimental Psychology: General, 145, 966–1000. doi:10.1037/xge0000175
   PubMed Web of Science ®Google Scholar
• Weigmann, K. (2015). The ethics of global clinical trials. Science and Society, 15(6), 566–570.
   Google Scholar