LOGIN TO YOUR ACCOUNT

Username
Password
Remember Me
Or use your Academic/Social account:

CREATE AN ACCOUNT

Or use your Academic/Social account:

Congratulations!

You have just completed your registration at OpenAire.

Before you can login to the site, you will need to activate your account. An e-mail will be sent to you with the proper instructions.

Important!

Please note that this site is currently undergoing Beta testing.
Any new content you create is not guaranteed to be present to the final version of the site upon release.

Thank you for your patience,
OpenAire Dev Team.

Close This Message

CREATE AN ACCOUNT

Name:
Username:
Password:
Verify Password:
E-mail:
Verify E-mail:
*All Fields Are Required.
Please Verify You Are Human:
fbtwitterlinkedinvimeoflicker grey 14rssslideshare1
Publisher: University of California Press
Languages: English
Types: Article
Subjects: wa_20_5, Article, 26bc6fb8, 3d471dd7
Consent and community engagement (CE) in health research are two aspects of a single concern—that research is carried out in a respectful manner where social value is maximized. There are important overlaps and interdependencies between consent and CE; for example, CE can provide insights into how best to tailor consent to context and can be an important component of consent processes. Engaging communities can also have intrinsic and instrumental value beyond consent; for example, as a means of showing respect and identifying appropriate ways of working respectfully. In this paper we critically examine how CE and consent processes are characterized, conducted, and evaluated in diverse health research contexts, and propose a preliminary research agenda to support future learning in these critical areas.
  • The results below are discovered through our pilot algorithms. Let us know how we are doing!

    • Abdool Karim, Q., Abdool Karim, S. S., Coovadia, H. M., Barsdorf, N. W., & Wassenaar, D. R. (2005). Racial diff-er & Susser, M. (1998). Informed consent for HIV testing in a ences in public perceptions of voluntariness of medical South African hospital: Is it truly informed and truly volunr-esearch participants in South Africa. Social Science and tary? American Journal of Public Health, 88(4), 637-640. Medicine, 60(5), 1087-1098.
    • Appelbaum, P. S., Lidz, C. W., & Grisso, T. (2004). Therapeutic Bastida, E. M., Tseng, T. S., McKeever, C., & Jack, L., Jr. (2010).
    • misconception in clinical research: Frequency and risk factorEst.hics and community-based participatory research: Perspec IRB: Ethics & Human Research, 26(2), 1-8. tives from the field. Health Promotion Practice, 11(1), 16-20.
    • Arnstein, S. (1969). A ladder of citizen participation. Journal oBf eauchamp, T. L., & Childress, J. F. (2001). Principles of biothe American Institute of Planners, 35, 216-224. medical ethics (5th ed.). Oxford: Oxford University Press.
    • Bandewar, S. V., Kimani, J., & Lavery, J. V. (2010). The origins Berger, O., Gronberg, B. H., Sand, K., Kaasa, S., & Loge, J. H.
    • of a research community in the Majengo Observational (2009). The length of consent documents in oncological trials Cohort Study, Nairobi, Kenya. BMC Public Health,10, 630. is doubled in twenty years. Annals of Oncology, 20(2), 379-385.
    • Bhansali, S., Shafiq, N., Malhotra, S., Pandhi, P., Singh, I., The benchmarks of ethical research. Journal of Infectious Venkateshan, S. P., & Talwar, K. K. (2009). Evaluation of the Disease, 189(5), 930-937.
    • ability of clinical research participants to comprehend infoFramdeedn, R. R., Beauchamp, T. L., & King, N. M. P. (1986). A hisconsent form. Contemporary Clinical Trials, 30(5), 427-430. tory and theory of informed consent. New York: Oxford Boga, M., Davies, A., Kamuya, D., Kinyanjui, S. M., Kivaya, E., University Press.
    • Kombe, F., et al. (2011). Strengthening the informed consent Fitzgerald, D. W., Marotte, C., Verdier, R. I., Johnson, process in international health research through communityW. D., Jr., & Pape, J. W. (2002). Comprehension during engagement: The KEMRI-Wellcome Trust Research informed consent in a less-developed country. Lancet, Programme Experience. PLoS Medicine, 8(9), e1001089. 360(9342), 1301-1302.
    • Brieland, D. (1971). Community advisory boards and maximum Flory, J., & Emanuel, E. (2004). Interventions to improve research feasible participation. American Journal of Public Health, 61(2), participants' understanding in informed consent for research: A 292-296. systematic review. Journal of the American Medical Association, Brugge, D. (2012). Institutional review boards need to increase 292(13), 1593-1601.
    • their understanding of community-based participatory reseaGrickho:nyo, C., Bejon, P., Marsh, V., & Molyneux, S. (2008).
    • Commentary on a case study in the ethics of mental health Taking social relationships seriously: Lessons learned from researchJo.urnal of Nervous and Mental Disease, 200(3), 242. the informed consent practices of a vaccine trial on the Bull, S., Farsides, B., & Tekola Ayele, F. (2012). Tailoring inf-or Kenyan Coast. Social Science and Medicine, 67(5), 708-720.
    • mation provision and consent processes to research contextsG:lannon, W. (2006). Phase I oncology trials: Why the therapeutic The value of rapid assessments. Journal of Empirical Research on misconception will not go away. Journal of Medical Ethics, 32(5), Human Research Ethics, 7(1), 35-50. 252-255.
    • Bull, S., & Lindegger, G. C. (2011). Ensuring consent to research International Conference on Harmonis(a1t9i9o6n). ICH harmonis voluntary: How far do we need to go? American Journal of ised tripartite guideline for good clinical practice (E6). In ICoHS Bioethics, 11(8), 27-29. Committee (Ed.), International conference on harmonisation of Cheah, P. Y., Lwin, K. M., Phaiphun, L., Maelankiri, L., technical requirements for registration of pharmaceuticals for Parker, M., Day, N. P., et al. (2010). Community engagement human use. Geneva: ICH.
    • on the Thai-Burmese border: Rationale, experience and lessJoonsseph, P., Schackman, B. R., Horwitz, R., Nerette, S., learntIn.ternational Health, 2(2), 123-129. Verdier, R. I., Dorsainvil, D., Fitzgerald, D. W. (2006).
    • Cornwall, A., & Jewkes, R. (1995). What is participatory The use of an educational video during informed consent in research? Social Science and Medicine, 41(12), 1667-1676. an HIV clinical trial in Haiti. Journal of Acquired Immune Council for International Organizations of Medical Sciences anDdeficiency Syndromes, 42(5), 588-591.
    • Dunn, M., Sheehan, M., Hope, T., & Parker, M. (2012). Toward Kass, N. E., Maman, S., & Atkinson, J. (2005). Motivations, methodological innovation in empirical ethics research. understanding, and voluntariness in international randomized Cambridge Quarterly of Healthcare Ethics, 21(4), 466-480. trialsIR.B: Ethics & Human Research, 27(6), 1-8.
    • Edwards, S. J., Lilford, R. J., Thornton, J., & Hewison, J. Khin, M. L., Peto, T. J., White, N. J., Day, N. P. J., Nosten, (1998). Informed consent for clinical trials: In search of the F., Parker, M., & Cheah, P. Y. (2013). The practicality and “best” method. Social Science and Medicine, 47(11), 1825-1840. sustainability of a community advisory board at a large mediEmanuel, E. J., Wendler, D., Killen, J., & Grady, C. (2004). cal research unit on the Thai-Myanmar border. Health, 5(2), What makes clinical research in developing countries ethical2?29-236.
    • Krosin, M. T., Klitzman, R., Levin, B., Cheng, J., & Ranney, Marsh, V. M., Kamuya, D. M., Mlamba, A. M., Williams, M. L. (2006). Problems in comprehension of informed T. N., & Molyneux, S. S. (2010). Experiences with consent in rural and peri-urban Mali, West Africa. Clinical community engagement and informed consent in a genetic Trials, 3(3), 306-313. cohort study of severe childhood diseases in Kenya. BMC Lang, T. A., Gould, J., von Seidlein, L., Lusingu, J. P., Mshamu, Medical Ethics, 11, 13.
    • S., Ismael, S., et al. (2012). Approaching the community about Marsh, V. M., Kamuya, D. M., Parker, M. J., & Molyneux, C. S.
    • screening children for a multicentre malaria vaccine trial. (2011). Working with concepts: The role of community i-n inter International Health 4(1), 47-54. national collaborative biomedical research. Public Health Ethics Lavery, J. V., Tinadana P. O., Scott, T. W., Harrington, L. C., 4(1), 26-39.
    • Ramsey, J. M., ytuarte-Nunez, C, & James, A. A. (2010). Marshall, P. A. (2004). The individual and the community in Towards a framework for community engagement in global international genetic research. Journal of Clinical Ethics, health research. Trends in Parasitology, 26(6), 279-283. 15(1), 76-86.
    • Leach, A., Hilton, S., Greenwood, B. M., Manneh, E., Dibba, Marshall, P. A. (2008). “Cultural competence” and informed B., Wilkins, A., & Mulholland, E. K. (1999). An evaluation of consent in international health research. Cambridge Quarterly the informed consent procedure used during a trial of a of Healthcare Ethics, 17(2), 206-215.
    • Haemophilus influenzae type B conjugate vaccine undertakeMnianrshall, P. A., Adebamowo, C. A., Adeyemo, A. A., The Gambia, West Africa. Social Science and Medicine, 48(2), Ogundiran, T. O., Vekich, M., Strenski, T., & Rotimi, C. N.
    • 139-148. (2006). Voluntary participation and informed consent to Leach, M., & Fairhead, J. (2007). Anxieties over science: international genetic research. American Journal of Public Engaging vaccine trials in The Gambia. In Leach and FairheadH,ealth, 96(11), 1989-1995.
    • Vaccine anxieties: Global science, child health and society (pp. Marshall, P. A., & Rotimi, C. (2001). Ethical challenges in 156-157). London: Earthscan. community-based research. American Journal of the Medical Lindegger, G., Milford, C., Slack, C., Quayle, M., Xaba, X., & Sciences, 322(5), 241-245.
    • Vardas, E. (2006). Beyond the checklist: Assessing understand-Masiye, F., Kass, N., Hyder, A., Ndebele, P., & Mfutso-Bengo, ing for HIV vaccine trial participation in South Africa. JournalJo.f(2008). Why mothers choose to enrol their children in Acquired Immune Deficiency Syndromes, 43(5), 560-566. malaria clinical studies and the involvement of relatives in Lindegger, G., & Richter, L. M. (2000). HIV vaccine trials: decision making: Evidence from Malawi. Malawi Medical Critical issues in informed consent. South African Journal of Journal, 20(2), 50-56.
    • Science, 96, 313-317. Mfutso-Bengo, J., Masiye, F., Molyneux, M., Ndebele, P., & Lindegger, G., & Van Loon, K. (2009). Informed consent in Chilungo, A. (2008). Why do people refuse to take part in bioclinical trials: Perceptions and experiences of a sample of medical research studies? Evidence from a resource-poor area.
    • South African researchers. Health SA Gesondheid, 14(1), 1-7. Malawi Medical Journal, 20(2), 57-63.
    • Loewenson, R. (2000). Public participation in health systems iMnolyneux, C. S., Peshu, N., & Marsh, K. (2004). Understanding Zimbabwe. IDS Bulletin, 31(1), 15-20. of informed consent in a low-income setting: Three case studies Lynoe, N., & Hoeyer, K. (2005). Quantitative aspects of informed from the Kenyan coast. Social Science and Medicine, 59(12), consent: Considering the dose response curve when estimating 2547-2559.
    • quantity of information. Journal of Medical Ethics, 31, 736-738. Molyneux, C. S., Peshu, N., & Marsh, K. (2005). Trust and Madhavan, S., Collinson, M., Townsend, N. W. , Kahn, K., & informed consent: Insights from community members on Tollman, S. M. (2007). The implications of long-term com- the Kenyan coast. Social Science and Medicine, 61(7), munity involvement for the production and circulation of 1463-1473.
    • population knowledge. Demographic Research, 17, 369-388. Molyneux, C. S., Wassenaar, D. R., Peshu, N., & Marsh, K.
    • Manafa, O., Lindegger, G., & Ijsselmuiden, C. (2007). Informed (2005). “Even if they ask you to stand by a tree all day, you will consent in an antiretroviral trial in Nigeria. Indian Journal of have to do it (laughter)...!”: Community voices on the notion and Medical Ethics, 4(1), 26-30. practice of informed consent for biomedical research in developMandava, A., Pace, C., Campbell, B., Emanuel, E., & Grady, C. ing countries. Social Science and Medicine, 61(2), 443-454.
    • (2012). The quality of informed consent: Mapping the land- Molyneux, S., & Geissler, P. W. (2008). Ethics and the ethnogscape-A review of empirical data from developing and raphy of medical research in Africa. Social Science and developed countries. Journal of Medical Ethics, 38(6), 356-365. Medicine, 67(5), 685-695.
    • Marsh, V., Kamuya, D., Rowa, Y., Gikonyo, C., & Molyneux, S. Molyneux, S., Gikonyo, C., Marsh, V., & Bejon, P. (2007).
    • (2008). Beginning community engagement at a busy biomedical Incorporating a quiz into informed consent processes: Qualiresearch programme: Experiences from the KEMRI CGMRC- tative study of participants' reactions. Malaria Journal, 6, 145.
    • Wellcome Trust Research Programme, Kilifi, Kenya. Social Molyneux, S., Kamuya, D. M., & Marsh, V. (2010). Community Science and Medicine, 67(5), 721-733. members employed on research projects face crucial, often under-recognized, ethical dilemmas. American Journal of informed consent in a clinical research study in Thailand. IRB: Bioethics, 10(3), 24-26. Ethics & Human Research, 27, 9-17.
    • Molyneux, S., Mulupi, S., Mbaabu, L., & Marsh, V. (2012). Pace, C., Talisuna, A., Wendler, D., Maiso, F., WabwireBenefits and payments for research participants: ExperienceMsangen, F., Bakyaita, N., et al. (2005). Quality of parental and views from a research centre on the Kenyan coast. BMC consent in a Ugandan malaria study. American Journal of Medical Ethics, 13, 13. Public Health, 95(7), 1184-1189.
    • Morin, S. F., Maiorana, A., Koester, K. A., Sheon, N. M., & Penn, C., & Evans, M. (2010). Assessing the impact of a Richards, T. A. (2003). Community consultation in HIV modified informed consent process in a South African HIV/ prevention research: A study of community advisory boards atA6 IDS research trial. Patient Education and Counseling(,28)0, research sites. Journal of Acquired Immune Deficiency Syndromes, 191-199.
    • 33(4), 513-520. Quinn, S. C. (2004). Ethics in public health research: Protecting Morin, S. F., Morfit, S., Maiorana, A., Aramrattana, A., human subjects-The role of community advisory boards.
    • Goicochea, P., Mutsambi, J. M., & Richards, T. A. (2008). American Journal of Public Health, 94(6), 918-922.
    • Building community partnerships: Case studies of commu- Ragin, D. F., Ricci, E., Rhodes, R., Holohan, J., Smirnoff, M., & nity advisory boards at research sites in Peru, Zimbabwe, andRichardson, L. D. (2008). Defining the “community” in comThailand. Clinical Trials,(52), 147-156. munity consultation for emergency research: findings from the Mtunthama, N., Malamba, R., French, N., Molyneux, M. E., community VOICES study. Social Science and Medicine, 66(6), Zijlstra, E. E., & Gordon, S. B. (2008). Malawians permit 1379-1392.
    • Journal of Medical Ethics, 34(4), 303-307. (2010). The role of community advisory boards in health Muhwava, W., Nyirenda, M., Mutevedzi, T., Herbst, J. A., & research: Divergent views in the South African experience.
    • Hosegood, V. (2007). Operational and methodological proce- SAHARA-J: Journal of Social Aspects of HIV/AIDS, 7(3), 2-8.
    • dures of the Africa Centre Demographic Information System. Reynolds, L., Cousins, T., Newell, M. L., & Imrie, J. (2013).
    • Monograph Series No. 1. South Africa: Africa Centre for The social dynamics of consent and refusal in HIV surveilHealth and Population Studies. lance in rural South Africa. Social Science and Medicine, 77, Mzimela, M. , Gafos, M. , Ndlovu, H., Pool, R. , Elford, J., & 118-125.
    • team, mdp. (2012). Women's reasons for enrolling in a Sarkar, R., Sowmyanarayanan, T. V., Samuel, P., Singh, A. S., microbicide clinical trial in a predominantly rural area of Bose, A., Muliyil, J., & Kang, G. (2010). Comparison of group KwaZulu-Natal, South Africa. (Poster) 2012 International counseling with individual counseling in the comprehension of Microbicides Conference, Sydney, Australia, 15-18 April 2012. informed consent: A randomized controlled trial. BMC Medical Nabulsi, M., Khalil, Y., & Makhoul, J. (2010). Parental atti- Ethics, 11, 8.
    • tudes towards and perceptions of their children's participSahtoiorne, N., Wong, K. A., Seifer, S. D., Grignon, J., & Gamble, in clinical research: A developing-country perspective. V. N. (2008). Introduction to special issue: Advancing the ethJournal of Medical Ethics, 37(7), 420-423. ics of community-based participatory research. Journal of Ndebele, P. M., Wassenaar, D., Munalula, E., & Masiye, F. Empirical Research on Human Research Ethics, 3(2), 1-4.
    • (2012). Improving understanding of clinical trial procedureSshubis, K., Juma, O., Sharifu, R., Burgess, B., & Abdulla, S.
    • among low literacy populations: An intervention within a (2009). Challenges of establishing a community advisory board microbicide trial in Malawi. BMC Medical Ethics, 13(1), 13-29. (CAB) in a low-income, low-resource setting: Experiences from Newman, P. A. (2006). Towards a science of community engage- Bagamoyo, Tanzania. Health Research Policy and Systems, 7, 16.
    • ment.Lancet, 367(9507), 302. Slevin, K., Morenike, U., & Lori, H. (2013). Community Nuffield Council on Bioethics. (2002). The ethics of research engagement in HIV prevention trials: Evolution of the field and related to healthcare in developing countries. London: Nuffield opportunities for growth. AIDS 2013 Background Paper at Council on Bioethics. www.path.org/publications/files/s2031_comm_engage.pdf.
    • Nuffield Council on Bioethics. (2005). The ethics of research Strauss, R. P., Sengupta, S., Quinn, S. C., Goeppinger, J., related to healthcare in developing countries: A follow-up Spaulding, C., Kegeles, S. M., & Millett, G. (2001). The role Discussion Paper based on the workshop held in Cape Town, of community advisory boards: Involving communities in the South Africa 12-14th February 2004. London: Nuffield Council informed consent process. American Journal of Public Health, on Bioethics. 91(12), 1938-1943.
    • Nyika, A. (2009). Ethical and practical challenges surroundiTnegkola, F., Bull, S., Farsides, B., Newport, M. J., Adeyemo, genetic and genomic research in developing countries. Acta A., Rotimi, C. N., & Davey, G. (2009a). Impact of social Tropica, 112(Suppl 1), S21-31. stigma on the process of obtaining informed consent for Pace, C., Emanuel, E. J., Chuenyam, T., Duncombe, C., genetic research on podoconiosis: A qualitative study. BMC Bebchuk, J. D., Wendler, D., et al. (2005). The quality of Medical Ethics, 10, 13.
    • Tekola, F., Bull, S. J., Farsides, B., Newport, M. J., Adeyemo, context: An analysis of a low-budget, small media, taxi-based, A., Rotimi, C. N., & Davey, G. (2009b). Tailoring consent to edutainment model applied in Jiving with Science. Critical Arts context: Designing an appropriate consent process for a biomeda-nd Education.
    • Diseases, 3(7), e482. (2011). Good participatory practice guidelines for biomedical Terry S. F., Terry P. F., Rauen, K. A., Uitto, J., & Bercovitch, HIV prevention trials (2nd ed.). Geneva: UNAIDS.
    • L. G. (2007). Advocacy groups as research organizations: TheUnited States National Bioethics Advisory Commi2s0si0o1n). ( PXE International example. Nature Review Genetics, 8, 157-164. Ethical and policy issues in international research: Clinical trials Tindana, P., Bull, S., Amenga-Etego, L., de Vries, J., Aborigo, in developing countries, Vol. II, Commissioned papers and staff R., Koram, K., et al. (2012). Seeking consent to genetic and analysis. Bethesda, MD: National Bioethics Advisory genomic research in a rural Ghanaian setting: A qualitative stCuodmymission.
    • of the MalariaGEN experience. BMC Medical Ethics, 13, 15. Vallely, A., Lees, S., Shagi, C., Kasindi, S., Soteli, S., Kavit, N., Tindana, P. O., Kass, N., & Akweongo, P. (2006). The informed et al. (2010). How informed is consent in vulnerable populaconsent process in a rural African setting: A case study of thteions? Experience using a continuous consent process during the Kassena-Nankana District of Northern Ghana. IRB: Ethics & MDP301 vaginal microbicide trial in Mwanza, Tanzania. BMC Human Research, 28, 1-6. Medical Ethics, 11, 10.
    • Tindana, P. O., Rozmovits, L., Boulanger, R. F., Bandewar, Vanlerbergh e, V., Toledo, M. E. , Rodriguez, M., Gomez, S. V., Aborigo, R. A., Hodgson, A. V., et al. (2011). Aligning D., Baly, A., Benitez, jr., et al. (2009). Community involvecommunity engagement with traditional authority structuremsent in dengue vector control: Cluster randomized trial.
    • in global health research: A case study from northern GhanaB.ritish Medical Journal, 338, b:1959.
    • American Journal of Public Health, 101(10), 1857-1867. Woodsong, C., & Karim, Q. A. (2005). A model designed to Tindana, P. O., Singh, J. A., Tracy, C. S., Upshur, R. E., Daar, enhance informed consent: Experiences from the HIV preA. S., Singer, P. A., et al. (2007). Grand challenges in global vention trials network. American Journal of Public Health, health: Community engagement in research in developing 95(3), 412-419.
    • countries. PLoS Medicine, 4(9), e273. World Medical Association. (2008). Declaration of Helsinki. In Treffry-Goatley, A., Mahlinza, M., & Imrie, J. (2013, in press). World Medical Assembly (Ed.), 59th World Medical Assembly, Public engagement with HIV/AIDS in a rural, South African Seoul (7th ed.).
  • No related research data.
  • No similar publications.

Share - Bookmark

Funded by projects

  • WT | Consent to and community eng...

Cite this article