Consent and Community Engagement – A Bibliography in Progress
Revised - April 2012
1. Abdool Karim, Q., et al., Informed consent for HIV testing in a South African hospital: is it truly informed and truly voluntary? Am J Public Health, 1998. 88(4): p. 637-40
2. Abelson J, Forest P-G, Eyles J, Casebeer A, Martin E, Mackean G. Examining the role of context in the implementation of a deliberative public participation experiment: Results from a Canadian comparative study. Social Science & Medicine 2007;64:2115–2128.
3. Adams V, Miller S, Craig S, Sonam, Nyima, Droyoung, Le PV, Varner M: Informed Consent in cross-cultural perspective: clinical research in the Tibetan Autonomous Region, PRC. Cult Med Psychiatry 2007, 31(4):445-472.
4. Aguilera-Guzman RM. Ethical considerations in community interventions: The pertinence of informed consent. Salud Mental. 2008;Print(129-138):129-138.
5. Alcaraz G, Correa A. [Research ethics: the case with the tule (kuna), Urabba, Colombia]. Biomedica 2006;26(1):9-21.
6. Alicherry MK, A.D. Misuse Detection in Consent-Based Networks. LECTURE NOTES IN COMPUTER SCIENCE 2011;NUMB 6715:38-56.
7. Almeida CHM, Rita de Cássia; Reis, Dener Carlos; Melo, Juliana Machado do Couto; Diemert, David; Gazzinelli, Maria Flávia. A pesquisa científica na saúde: uma análise sobre a participação de populações vulneráveis / La investigación científica en salud: un análisis sobre la participación de las poblaciones vulnerables / Scientific research in health care: an analysis on the participation of vulnerable populations. Texto & Contexto Enfermagen 2010;19(1):104-111.
8. Al-Riyami, A.; Jaju, D.; Jaju, S.; Silverman, H. J. The adequacy of informed consent forms in genetic research in Oman: a pilot study. Developing World Bioethics 2011;11(2):57-62.
9. Anderson MS, Ijeoma; Gerver, Sarah; Elam, Gillian;, MacFarlane EF, Kevin; Easterbrook, Philippa. Research Note: The LIVITY study: research challenges and strategies for engaging with the black Caribbean community in a study of HIV infection. International Journal of Social Research Methodology 2009;12(3):197-209.
10. Ansari WE, Weiss ES. Quality of research on community partnerships: developing the evidence base. Health Education Research 2006;21(2):175–180.
11. Araali BB. Perceptions of research assistants on how their research participants view informed consent and its documentation in Africa. Research Ethics Review 2011;7(2):39-50. http://rea.sagepub.com/content/7/2/39.refs
12. Bandewar SV, Kimani J, Lavery JV. The origins of a research community in the Majengo observational cohort study, Nairobi, Kenya. BMC Public Health 2010;10(630).
13. Bandewar S. Cultural barriers, 'competence' and informed consent in population-based surveys. Issues Med Ethics 2003;11(2):49-51.
14. Bandewar, S. (2009). Community engagement in biomedical research: Drawing from the developmental discourse. The Joint Centre for Bioethics Voice 14(7). University of Toronto, Toronto, Canada.
15. Baren JM, Biros MH. The research on community consultation: an annotated bibliography. Acad Emerg Med 2007;14(4):346-52.
16. Barnett AT, Crandon I, Lindo JF, Gordon-Strachan G, Robinson D, Ranglin D. An assessment of the process of informed consent at the University Hospital of the West Indies. J Med Ethics 2008;34:344-347.
17. Barrett, R.J. and Parker, D.B. Rites of consent: negotiating research participation in diverse cultures. Monash Bioethics Review, 2003, 22 (2): p. 9
18. Barsdorf NW, Wassenaar DR. Racial Differences in Public Perceptions of Voluntariness of Medical Research Participants in South Africa. Social Science & Medicine 2005;60(5):1087-1098.
19. Benitez O, Devaux D, Dausset J. Audiovisual documentation of oral consent: a new method of informed consent for illiterate populations. Lancet 2002;359(9315):1406-7.
20. Berger O, Gronberg BH, Sand K, Kaasa S, Loge JH. The length of consent documents in oncological trials is doubled in twenty years. Ann Oncol 2009;20(2):379-85.
21. Bhan A, Singh JA, Upshur REG, Singer PA, Daar AS. Grand Challenges in Global Health: Engaging Civil Society Organizations in Biomedical Research in Developing Countries. PLoS Medicine 2007;4(9):1456-1459.
22. Bhansali S, Shafiq N, Malhotra S, Pandhi P, Singh I, Venkateshan SP, Siddhu S, Sharma YP, Talwar KK: Evaluation of the ability of clinical research participants to comprehend informed consent form. Contemp Clin Trials 2009, 30(5):427-430.
23. Biros MH, Sargent C, Miller K. Community attitudes towards emergency research and exception from informed consent. Resuscitation 2009;80(12):1382-7.
24. Boga M, Davies A, Kamuya D, Kinyanjui S*, Kivaya S, Konbe F, Lang T, Marsh V, Mbete B, Mlamba A, Molyneux S, Mulupi S, Mwalukore S. The Consent and Communication Committee1; (2011) Using locally developed templates for tools and process to strengthen informed consent in international health research; (In press - PLoS Medicine)
25. Brito A. Community participation and representation in genetic studies: testing the application of fundamental ethical principles. St Thomas Law Rev 2001;13(4):935-43.
26. Brugge D, Kole A, Lu W, Must A. Susceptibility of elderly Asian immigrants to persuasion with respect to participation in research. J Immigr Health 2005;7(2):93-101.
27. Bulger EM, Schmidt TA, Cook AJ, Brasel KJ, Griffiths DE, Kudenchuk PJ, et al. The random dialing survey as a tool for community consultation for research involving the emergency medicine exception from informed consent. Ann Emerg Med 2009;53(3):341-50, 350 e1-2.
28. Bull, J.R. Research with Aboriginal Peoples: Authentic Relationships as a Precursor to Ethical Research. J of Empirical Research on Human Research Ethics 2010; 5(4):13-22.
29. Cash RA. What is owed to the community before, during and following research: an ethical dialogue. East Mediterr Health J 2006;12 Suppl 1:S37-41.
30. Cheah PY and Lwin KM. Community Engagement on the Thai-Burmese Border: Rationale, Experience and Lessons Learnt. International Health 2010; 2(2):123-9.
31. Castleden, H.; Morgan, V.S.; Neimanis, A. Researchers' Perspectives on Collective/Community Co-authorship in Community-based Participatory Indigenous Research. J of Empirical Research on Human Research Ethics 2010; 5(4):23-32.
32. Cohen ER, Masum H, Berndtson K, Saunders V, Hadfield T, Panjwani D, et al. Public engagement on global health challenges. BMC Public Health 2008;8(168).
33. Cohen ER, O'Neill JM, Joffres M, Upshur RE, Mills E. Reporting of informed consent, standard of care and post-trial obligations in global randomized intervention trials: a systematic survey of registered trials. Dev World Bioeth 2009;9(2):74-80.
34. Corneli AL, Piwoz EG, Bentley ME, Moses A, Nkhoma JR, Tohill BC, et al. Involving communities in the design of clinical trial protocols: the BAN Study in Lilongwe, Malawi. Contemp Clin Trials 2007;28(1):59-67.
35. Cortés DE, Drainoni, Mari-Lynn , Henault, Lori E. and Paasche-Orlow, Michael K. How to Achieve Informed Consent for Research from Spanish-Speaking Individuals with Low Literacy: A Qualitative Report. Journal of Health Communication 2010;15(SUPP/2):172-182.
36. Cox AC, Fallowfield LJ, Jenkins VA. Communication and informed consent in phase 1 trials: a review of the literature. Support Care Cancer 2006;14(4):303-9.
37. Creed-Kanashiro H, Ore B, Scurrah M, Gil A, Penny M. Conducting research in developing countries: experiences of the informed consent process from community studies in Peru. J Nutr 2005;135(4):925-8.
38. Dalla-Zuanna G. Tacit Consent: The Church and Birth Control in Northern Italy. Population and Development Review 2011;37(2):361-374.
39. Davis DS. Genetic Research & Communal Narratives. Hastings Cent Rep 2004;34(4):40-49.
40. Dawson L, Kass NE. Views of US researchers about informed consent in international collaborative research. Soc Sci Med 2005;61(6):1211-22.
41. DeCosta A, D'Souza N, Krishnan S, Chhabra MS, Shihaam I, Goswami K. Community based trials and informed consent in rural north India. J Med Ethics 2004;30(3):318-23.
42. Dein S, Bhui K. Issues concerning informed consent for medical research among non-westernized ethnic minority patients in the UK. J R Soc Med 2005;98(8):354-6.
43. Desclaux AK, Seni; Obermeyer, Carla Makhlouf Stakeholders' participation in operational research on HIV care: insights from Burkina Faso. AIDS 2010;24 ((Suppl 1)):S79-S85.
44. Diallo DA, Doumbo OK, Plowe CV, Wellems TE, Emanuel EJ, Hurst SA. Community Permission for Medical Research in Developing Countries. Clinical Infectious Diseases 2005;41:255-9.
45. Dickert N, Sugarman J. Ethical Goals of Community Consultation in Research. American Journal of Public Health 2005;95(7):1123-1127.
46. Dickert NW, Sugarman J. Community consultation: not the problem--an important part of the solution. Am J Bioeth 2006;6(3):26-8.
47. Dix ES, Esposito D, Spinosa F, Olson N, Chapman S. Implementation of community consultation for waiver of informed consent in emergency research: one Institutional Review Board's experience. J Investig Med 2004;52(2):113-6.
48. Dresden, G.M. and M.A. Levitt, Modifying a standard industry clinical trial consent form improves patient information retention as part of the informed consent process. Acad Emerg Med, 2001. 8(3): p. 246-52.
49. Dunn LB, Jeste DV. Enhancing informed consent for research and treatment. Neuropsychopharmacology 2001;24(6):595-607.
50. Edwards SJ, Lilford RJ, Thornton J, Hewison J. Informed consent for clinical trials: in search of the "best" method. Soc Sci Med 1998;47(11):1825-40.
51. Ekouevi KD, Becquetb R, Vihoa I, Bequeta L, Dabisb Fo, Leroyb Vr, et al. Obtaining informed consent from HIV-infected pregnant women, Abidjan, Coˆ te d’Ivoire. AIDS 2004;18(10):1486-1488.
52. El-Zahabi L, Lavery JV. Precaution through effective community engagement in research with modified mosquitoes. Asia and Pacific Journal of Molecular Biology and Biotechnology 2010; 18(2): 247-50.
53. Epstein S. The Rise of 'Recruitmentology': Clinical Research, Racial Knowledge, and the Politics of Inclusion and Difference. Social Studies of Science 2008;38(5):801-832.
54. Essack Z, Koen J, Barsdorf N, Slack C, Quayle M, Milford C, et al. Stakeholder perspectives on ethical challenges in HIV vaccine trials in South Africa. Dev World Bioeth 2010;10(1):11-21.
55. Excler J, Kochhar S, Kapoor S, Das S, Bahri J, Ghosh MD, Ganguly NK, Nayyar A, Chataway M. . Preparedness for AIDS vaccine trials in India. Indian Journal of Medical Research 2008;127(6):531-8.
56. Ezeome ER, Marshall PA. Informed consent practices in Nigeria. Dev World Bioeth 2009;9(3):138-48.
57. Fairhead J, Leach M, Small M. Where techno-science meets poverty: medical research and the economy of blood in The Gambia, West Africa. Social Science & Medicine 2006;63(4):1109-20.
58. Fairhead, J., M. Leach, and M. Small, Public engagement with science? Local understandings of a vaccine trial in The Gambia. Journal of Biosocial Science, 2006. 38: p. 103-116.
59. Festinger DS, Dugosh KL, Croft JR, Arabia PL, Marlowe DB. Corrected Feedback: A Procedure to Enhance Recall of Informed Consent to Research Among Substance Abusing Offenders. Ethics & Behavior 2010;20(5):387 — 399.
60. Fisher, J.A., Procedural Misconceptions and Informed Consent: Insights from Empirical Research on the Clinical Trials Industry. Kennedy Institute Of Ethics Journal, 2006. 16: p. 251-268.
61. Fitzgerald DW, Marotte C, Verdier RI, Johnson WD, Jr., Pape JW. Comprehension during informed consent in a less-developed country. Lancet 2002;360(9342):1301-2.
62. Flory J, Emanuel E. Interventions to Improve Research Participants' Understanding in Informed Consent for Research: A Systematic Review. JAMA 2004;292(13):1593-1601.
63. Folayan MO, Mutengu-Kasirye L, Calazans G. Participating in biomedical research. JAMA 2009;302(20):2201-2; author reply 2202.
64. Frimpong-Mansoh A. Culture and voluntary informed consent in African health care systems. Developing world bioethics 2008;8(2):104-114.
65. Geissler, W., `Kachinja are coming!' encounters around medical research work in a Kenyan village. Africa, 2005. 75: p. 173-202.
66. Geissler PW, Kelly A, Imoukhuede B, Pool R. '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. Soc Sci Med 2008;67(5):696-707.
67. Gikonyo C, Bejon P, Marsh V, Molyneux S. Taking social relationships seriously: lessons learned from the informed consent practices of a vaccine trial on the Kenyan Coast. Soc Sci Med 2008;67(5):708-20.
68. Gitanjali B RR, Pandian DG, Sujindra S. . Recruitment of subjects for clinical trials after informed consent: does gender and educational status make a difference? Journal of Postgraduate Medicine 2003;49(2):109-13.
69. Guarino P, Lamping DL, Elbourne D, Carpenter J, Peduzzi P. A brief measure of perceived understanding of informed consent in a clinical trial was validated. Journal of Clinical Epidemiology 2006;59:608–614.
70. Gutie´rrez-Lunaa A, Angeles-Llerenasa A, Wirtzb V, Del Rı´oc AnAl, Zamilpa-Mejı´aa L, Aranda-Floresd C, et al. Strategies and ethical considerations for the recruitment of young men who have sex with men: challenges of a vaccination trial in Mexico. Clinical Trials 2009;6:365–372.
71. Harding A, Harper B, Stone D, O'Neill C,Berger P, Harris S, Donatuto J. Conducting research with tribal communities: sovereignty, ethics, and data-sharing issues. Environmental Health Perspectives 2012;120(1):6-10.
72. Helgesson G, Ludvigsson J, Gustafsson Stolt U. How to handle informed consent in longitudinal studies when participants have a limited understanding of the study. J Med Ethics 2005;31:670–673.
73. Hill Z, Tawiah-Agyemang C, Odei-Danso S, Kirkwood B. Informed consent in Ghana: what do participants really understand? J Med Ethics 2008;34(1):48-53.
74. Holmes-Rovner M, Wills CE. Improving informed consent: insights from behavioral decision research. Med Care 2002;40(9 Suppl):V30-8.
75. Howarth CS. Towards a Social Psychology of Community: A Social Representations Perspective. Journal for the Theory of Social Behaviour 2001;31(2):223-238.
76. Hudson M. Think globally, act locally: collective consent and the ethics of knowledge production International Social Science Journal 2009;60(195):125-133.
77. Jackson GNS, T.; Reide, P.; Yentis, S. M. The capacity to consent to epidural analgesia in labour. International J of Obstetric Anesthesia 2011;20(3):269-270.
78. Jain S, Chawla D, Bansal A. Neonatal Research: Parent’s Perception of Informed Consent. Indian Journal of Pediatrics 2010;77(7):818.
79. Jegede AS. Understanding informed consent for participation in international health research. Dev World Bioeth 2009;9(2):81-7.
80. Jianping W, Li L, Xue D, Tang Z, Jia X, Wu R, et al. Analysis of the status of informed consent in medical research involving human subjects in public hospitals in Shanghai. Journal of Medical Ethics 2010;36(7):415-41.
81. Joffe S, Cook EF, Cleary PD, Clark JW, Weeks JC. Quality of Informed Consent: a New Measure of Understanding Among Research Subjects. J Natl Cancer Inst 2001;93(2):139–47.
82. Joseph PS, Bruce R.; Horwitz, Russel; Nerette, Sandy; Verdier, Rose Irene; Dorsainvil, Dominique; Theodore, Harry; Ascensio, Maxi; Henrys, Katia; Wright, Peter F.; Johnson, Warren; Pape, Jean W. MD; Fitzgerald, Daniel W. . The Use of an Educational Video During Informed Consent in an HIV Clinical Trial in Haiti. JAIDS Journal of Acquired Immune Deficiency Syndromes 2006;42(5):588-591.
83. Joubert, G., et al., Consent for participation in the Bloemfontein vitamin A trial: how informed and voluntary? Am J Public Health, 2003. 93(4): p. 582-4.
84. Juengst ET. What "Community Review" Can and Cannot Do. Journal of Law, Medicine, and Ethics 2000;28:52-54.
85. Kaewpoonsri N, Okanurak K, Kitayaporn D, Kaewkungwal J, Vijaykadga S, Thamaree S. Factors related to volunteer comprehension of informed consent for a clinical trial. The Southeast Asian Journal of Tropical Medicine and Public Health 2006;37(5):996-1004.
86. Kass NE, Maman S, Atkinson J. Motivations, understanding, and voluntariness in international randomized trials. IRB 2005;27(6):1-8.
87. Kaufman CER, Saumya. Community Confidentiality, Consent, and the Individual Research Process: Implications for Demographic Research. Population Research and Policy Review 2005;24(2):149-173.
88. Kaufmann CL. Informed consent and patient decision making: two decades of research. Soc Sci Med 1983;17(21):1657-64.
89. Kneipp SM, Lutz BJ, Means D. Reasons for enrollment, the informed consent process, and trust among low-income women participating in a community-based participatory research study. Public Health Nurs 2009;26(4):362-9.
90. Krosin MT, Klitzman R, Levin B, Cheng J, Ranney ML. Problems in comprehension of informed consent in rural and peri-urban Mali, West Africa. Clin Trials 2006;3(3):306-13.
91. Lairumbi GM, Molyneux S, Snow RW, Marsh K, Peshu N, English M. Promoting the social value of research in Kenya: examining the practical aspects of collaborative partnerships using an ethical framework. Soc Sci Med 2008;67(5):734-47.
92. Lavery JV, Tinadana PO, Scott TW, Harrington LC, Ramsey JM, Ytuarte-Nunez C, et al. Towards a framework for community engagement in global health research. Trends Parasitol 2010; 26(6):279-83.
93. Lavery, JV., Bandewar, S. Kimani. J., Upshur, REG., Plummer, FA., and Singer, PA. (2010). Relief of oppression: an organizing principle for observational researchers’ obligations to participants in developing countries. BMCentral Public Health, June 30, 2010.
94. Lavori PW, Sugarman J, Hays MT, Feussner JR. Improving Informed Consent in Clinical Trials: A Duty to Experiment Controlled Clinical Trials 1999;20(2):187-193.
95. Leach A, Hilton S, Greenwood BM, Manneh E, Dibba B, Wilkins A, et al. An evaluation of the informed consent procedure used during a trial of a Haemophilus influenzae type B conjugate vaccine undertaken in The Gambia, West Africa. Soc Sci Med 1999;48(2):139-48.
96. Lema VM, Mbondo M, Kamau EM. Informed consent for clinical trials: a review. East Afr Med J 2009;86(3):133-42.
97. Lewis RJ. Community consultation by randomly reaching out to the community. Ann Emerg Med 2009;53(3):351-3.
98. Lindegger G. Informed consent in HIV Vaccine trials. P. Kahn (Ed.) AIDS Vaccine Handbook: Global perspectives (2nd edition). New York: AIDS Vaccine Advocacy Coalition (AVAC) 2005.
99. Lindegger,G. & Bull,S. (2002). Ensuring valid consent in a developing country context. Invited submission to SciDev Net. (Award for best submission in the area in 2002.) http://www.scidev.net/dossiers/ethics/erpolicy_lindegger_bull.html
100. Lindegger G, & Richter, L. HIV vaccine trials: Critical issues in informed consent. South African Journal of Science 2000;96:313-318.
101. Lindegger G, Slack C, Vardas E. HIV vaccine trials in South Africa--some ethical considerations. S Afr Med J 2000;90(8):769-72.
102. Lindegger G, Milford, C., Slack, C., Quayle, M., Xaba, X. & Vardas, E. Beyond the checklist: Assessing understanding for HIV vaccine trial participation in South Africa. JAIDS Journal of Acquired Immune Deficiency Syndromes 2006;43(5):560-566.
103. Lindegger G, & Van Loon, K. Informed consent in clinical trials:Perceptions and experiences of a sample of South African researchers. Health SA Gesondheid 2009;14(1):Art. #463.
104. Love, R.R. and N.C. Fost, Ethical and regulatory challenges in a randomized control trial of adjuvant treatment for breast cancer in Vietnam. J Investig Med, 1997. 45(8): p. 423-31.
105. Lynoe N, Hoeyer K. Quantitative aspects of informed consent: considering the dose response curve when estimating quantity of information. J Med Ethics 2005;31(12):736-8.
106. Lynöe N, Sandlund M, Dahlqvist G, and Jacobsson L. Informed consent: study of quality of information given to participants in a clinical trial. BMJ, 1991. 303(6803): p. 610-13.
107. Lynöe N, Chowdhury M and Ekström L. Obtaining informed consent in Bangladesh. N Engl J Med, 2001. 344(6): p. 460-1.
108. Lynöe N, Sandlund M, Jacobsson L, Nordberg G and Jin T. Informed consent in China: quality of information provided to participants in a research project. Scand J Public Health, 2004. 32(6): p. 472-5.
109. Macaulay AC, Commanda LE, Freeman WL, Gibson N, McCabe ML, Robbins CM, et al. Participatory research maximises community and lay involvement. BMJ 1999;319:774-778.
110. Mackenzie CM, Christopher; Pittaway, Eileen. Beyond 'Do No Harm': The Challenge of Constructing Ethical Relationships in Refugee Research. Journal of Refugee Studies 2007;20(2):299-319.
111. Macklin R. Informed consent for research: international perspectives. J Am Med Womens Assoc 2000;55(5):290-3.
112. MACPHERSON CC. TO STRENGTHEN CONSENSUS, CONSULT THE STAKEHOLDERS. Bioethics 2004;18(3):283-292.
113. MacQueen K, McLellan E, Metzger D, Kegeles SM, Strauss RP, Scotti R, et al. What is Community? An Evidence-Based Definition for Participatory Public Health. American Journal of Public Health 2001;91(12):1929-1938.
114. MacQueen KM, Vanichseni S, Kitayaporn D, Lin LS, Buavirat A, Naiwatanakul T, Raktham S, Mock P, Heyward WL, Des Jarlais DC et al: Willingness of injection drug users to participate in an HIV vaccine efficacy trial in Bangkok, Thailand. J Acquir Immune Defic Syndr 1999, 21(3):243-251.
115. Manafa O, Lindegger G, Ijsselmuiden C. . Informed consent in an antiretroviral trial in Nigeria. Indian Journal of Medical Ethics 2007;4(1):26-30.
116. Manafa,O. Lindegger,G. Ijsselmuiden,C. (2007). Informed consent in a clinical trial: participants satisfaction of the consent process and voluntariness of participation. Online Journal of Health Ethics, Vol. 1., No.1.
117. Mariner WK. Taking Informed Consent Seriously in Global HIV Vaccine Research. JAIDS Journal of Acquired Immune Deficiency Syndromes 2003;32(2):117-123.
118. Marsh VM, Kamuya DM, Mlamba AM, Williams TN, Molyneux SS. Experiences with community engagement and informed consent in a genetic cohort study of severe childhood diseases in Kenya. BMC Medical Ethics 2010;11(13).
119. Marsh VM, Kamuya DM, Parker MJ and Molyneux CS (in press) Working with concepts: The role of community in international collaborative biomedical research. Public Health Ethics, Special Edition on Concepts of Community.
120. Marsh VM, Kamuya DM, Rowa Y, Gikonyo C, Molyneux SS. Beginning community engagement at a busy biomedical research programme: Experiences from the KEMRI CGMRC-Wellcome Trust Research Programme, Kilifi, Kenya. Social Science & Medicine 2008:1-13.
121. Marsh V, Kamuya D, Mike P, Molyneux S (2011) Working with concepts: The role of community in international collaborative biomedical research (in-press - Journal of Public Health Ethics ).
122. Marsh VM, Mutemi W, Some ES, Haaland A, Snow RW. Evaluating the community education programme of an insecticide-treated bed net trial on the Kenyan coast. Health Policy Plan 1996;11(3):280-91.
123. MARSHALL PA. INFORMED CONSENT IN INTERNATIONAL HEALTH RESEARCH. Journal of Empirical Research on Human Research Ethics 2006:25-42.
124. Marshall PA. "Cultural competence" and informed consent in international health research. Camb Q Healthc Ethics 2008;17(2):206-15.
125. Marshall PA. The individual and the community in international genetic research. J Clin Ethics 2004;15(1):76-86.
126. Marshall P, Ethical Issues in Research Design and Informed Consent to Biomedical and Social Research in Resource Poor Settings. Geneva: World Health Organization, Special Topics in Social, Economic, and Behavioral Research Series of Programme for Research and Training in Tropical Diseases (TDR), 2007.
127. Marshall PA, Berg JW. Protecting communities in biomedical research. Am J Bioeth 2006;6(3):28-30; discussion W46-8.
128. Marshall PA, Rotimi C. Ethical challenges in community-based research. Am J Med Sci 2001;322(5):241-45.
129. Marshall PA, Adebamowo CA, Adeyemo AA, Ogundiran TO, Vekich M, Strenski T, Zhou J, Prewitt TE, Cooper RS, Rotimi CN: Voluntary participation and informed consent to international genetic research. Am J Public Health 2006, 96(11):1989-1995.
130. Masiye F, Kass N, Hyder A, Ndebele P, Mfutso-Bengo J. Why mothers choose to enrol their children in malaria clinical studies and the involvement of relatives in decision making: evidence from Malawi. Malawi Med J 2008;20(2):50-6.
131. Mathews C, Guttmacher S, Flisher A, Mtshizana Y, Hani A, Zwarenstein M. Written parental consent in school-based HIV/AIDS prevention research. American Journal of Public Health 2005;95(7):1266-9.
132. McCabe M, Morgan F, Curley H, Begay R, Gohdes DM. The informed consent process in a cross-cultural setting: is the process achieving the intended result? Ethn Dis 2005;15(2):300-4.
133. McCullough LB. Toward ethical best practices in community consultation for research conducted with waiver of informed consent. Crit Care Med 2008;36(3):993-4.
134. McGrath JW, George K, Svilar G, Ihler E, Mafigiri D, Kabugo M, Mugisha E: Knowledge about vaccine trials and willingness to participate in an HIV/AIDS vaccine study in the Ugandan military. J Acquir Immune Defic Syndr 2001, 27(4):381-388.
135. McGrath P, Phillips E. Western Notions of Informed Consent and Indigenous Cultures: Australian Findings at the Interface Journal of Bioethical Inquiry 2008;5(1):21-31.
136. Meisel A, Roth LH. What we do and do not know about informed consent. JAMA 1981;246(21):2473-7.
137. Meisel A, Roth LH. Toward an informed discussion of informed consent: a review and critique of the empirical studies. Ariz Law Rev 1983;25(2):265-346.
138. Mfutso-Bengo J, Masiye F, Molyneux M, Ndebele P, Chilungo A. Why do people refuse to take part in biomedical research studies? Evidence from a resource-poor area. Malawi Med J 2008;20(2):57-63.
139. Mfutso-Bengo J, Ndebele P, Jumbe V, Mkunthi M, Masiye F, Molyneux S, et al. Why do individuals agree to enrol in clinical trials? A qualitative study of health research participation in Blantyre, Malawi. Malawi Med J 2008;20(2):37-41.
140. Mfutso-Bengo J, Ndebele P, Masiye F. Disseminating research results to research participants and their communities. Malawi Med J 2008;20(2):64-6.
141. Minkler M. Community-based research partnerships: challenges and opportunities. J Urban Health 2005;82(2 Suppl 2):ii3-12.
142. Minnies D, Hawkridge T, Hanekom W, Ehrlich R, London L, Hussey G. Evaluation of the quality of informed consent in a vaccine field trial in a developing country setting. BMC Med Ethics 2008;9:15.
143. Mitchell K, Nakamanya S, Kamali A, Whitworth JAG. Balancing rigour and acceptability: the use of HIV incidence to evaluate a community-based randomised trial in rural Uganda. Social Science & Medicine 2002;54:1081–1091.
144. Molyneux CS, Peshu N, Marsh K. Understanding of informed consent in a low-income setting: three case studies from the Kenyan Coast. Soc Sci Med 2004;59(12):2547-59.
145. Molyneux CS, Peshu N, Marsh K. Trust and informed consent: insights from community members on the Kenyan coast. Soc Sci Med 2005;61(7):1463-73.
146. Molyneux, CS, Wassenaar D., Peshu N., & Marsh, K. (2005) ‘Even if they ask you to stand by a tree all day, you will have to do it!’: Community voices on the notion and practice of informed consent, Social Science and Medicine, 61(2), 443-454.
147. Molyneux S, Gikonyo C, Marsh V, Bejon P. Incorporating a quiz into informed consent processes: qualitative study of participants' reactions. Malar J 2007;6:145.
148. Molyneux S, Kamuya D, Marsh V. Community members employed on research projects face crucial, often under-recognized, ethical dilemmas. Am J Bioeth 2010;10(3):24-6.
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