Body

As a complement to the work with the participants of the workshops and roundtables we did a scoping review of the literature to identify key issues of research ethics and integrity in global research and practices that can help address them.

Below you can find a list of the most relevant papers we found:

Addissie, A., G. Davey, M. J. Newport, T. Addissie, H. Macgregor, Y. Feleke, and B. Farsides. 2014. "A mixed-methods study on perceptions towards use of Rapid Ethical Assessment to improve informed consent processes for health research in a low-income setting." BMC Medical Ethics 15 (1): 15-35. doi: 10.1186/1472-6939-15-35.

Adeleye, O. A., and T. O. Ogundiran. 2013. "Knowledge of and Training in Research Ethics in an African Health Research Community." AJOB Primary Research 4 (2):44-50. doi: 10.1080/21507716.2012.720638.

Akpabio, E. M., and I. F. Esikot. 2014. "Social sciences and research ethics in developing countries: The perspective from Nigeria." African Journal of Science, Technology, Innovation and Development 6 (4):231-41. doi: 10.1080/20421338.2014.902562.

Amugune, B. K., and G. C. Verster. 2016. "Knowledge and attitude of postgraduate students in Kenya on ethics in mental health research." South African Journal of Bioethics and Law 9 (2):65-8. doi: 10.7196/SAJBL.2016.v9i2.470.

Anane-Sarpong, E., T. Wangmo, O. Sankoh, M. Tanner, and B. S. Elger. 2018. "Application of ethical principles to research using public health data in the global south: Perspectives from Africa." Developing World Bioethics 18 (2): 98-108. doi: 10.1111/dewb.12138.

Arksey, H., and L. O'Malley. 2005. Scoping studies: towards a methodological framework. International Journal of Social Research Methodology  8(1): 19-32.

Ateudjieu, J., J. Williams, M. Hirtle, C. Baume, J. Ikingura, A. Niaré, and D. Sprumont. 2010. "Training needs assessment in research ethics evaluation among research ethics committee members in three african countries: Cameroon, mali and tanzania." Developing World Bioethics 10 (2):88-98. doi: 10.1111/j.1471-8847.2009.00266.x.

Ayesha, Saeed. 2017. "Association of research ethics knowledge with previous research exposure and academic qualification among food and nutrition graduates in Pakistan." Khyber Medical University Journal; 2017 9(3):140-145.

Ayoub, N., A. Qandil, and J. McCutchan. 2019. "Knowledge, Attitudes, and Practice Regarding Research Ethics Committees Among Health Care Faculty at Two Public Universities in Jordan." Journal of empirical research on human research ethics. doi: 10.1177/1556264619851351

Ball, J., and H. Beazley. 2017. "The relational ethics of cultural safety, rights, and desire: Reflections on doing community-engaged research with migrant families in Indonesia." Migraciones (42):119-47.

Brahme, R., and S. Mehendale. 2009. "Profile and role of the members of ethics committees in hospitals and research organisations in Pune, India." Indian journal of medical ethics 6 (2):78-84.

Brear, M. 2018. "Ethical Research Practice or Undue Influence? Symbolic Power in Community- and Individual-Level Informed Consent Processes in Community-Based Participatory Research in Swaziland." Journal of Empirical Research on Human Research Ethics 13 (4):311-22. doi: 10.1177/1556264618761268.

Bukusi, E., Y. Manabe, and J. Zunt. 2019. "Mentorship and ethics in global health: fostering scientific integrity and responsible conduct of research. (Special Issue: Mentoring in low- and middle-income countries to advance global health research.)." American Journal of Tropical Medicine and Hygiene 100(1 Suppl ):42-47 34.

Burnette, C. E., S. Sanders, H. K. Butcher, and J. T. Rand. 2014. "A toolkit for ethical and culturally sensitive research: An application with indigenous communities." Ethics and Social Welfare 8 (4):364-82.

Bwakura-Dangarembizi, M., R. Musesengwa, K. J. Nathoo, P. Takaidza, T. Mhute, and T. Vhembo. 2012."Ethical and legal constraints to children's participation in research in Zimbabwe: Experiences from the multicenter pediatric HIV ARROW trial." BMC Medical Ethics 13 (1). doi: 10.1186/1472-6939-13-17.

Camp, J., R. Barfield, V. Rodriguez, A. Young, R. Finerman, and M. Caniza. 2009. "Challenges faced by research ethics committees in El Salvador: Results from a focus group study." Developing World Bioethics  9 (1):11-17.

Campbell-Page, R., and M. Shaw-Ridley. 2013. "Managing ethical dilemmas in community-based participatory research with vulnerable populations." Health promotion practice 14 (4):485-490.

Chansamouth, V., R. McGready, D. Chommanam, S. Homsombath, M. Mayxay, and P. N. Newton. 2017. "Enrolling pregnant women in research: Ethical challenges encountered in Lao PDR (Laos)." Reproductive Health 14. doi: 10.1186/s12978-017-0428-9.

Chantler, T., F. Otewa, P. Onyango, B. Okoth, F. Odhiambo, M. Parker, and P. W. Geissler. 2013. "Ethical Challenges that Arise at the Community Interface of Health Research: Village Reporters' Experiences in Western Kenya." Developing World Bioethics 13 (1):30-7. doi: 10.1111/dewb.12023.

Chenneville, T., L. Menezes, J. Kosambiya, and R. Baxi. 2016. "A Case-Study of the Resources and Functioning of Two Research Ethics Committees in Western India." Journal of Empirical Research on Human Research Ethics 11 (5):387-396. doi: 10.1177/1556264616636235.

Chiumento, A., M. N. Khan, A. Rahman, and L. Frith. 2016. "Managing Ethical Challenges to Mental Health Research in Post-Conflict Settings." Developing World Bioethics 16 (1):15-28. doi: 10.1111/dewb.12076.

Coleman, C., C. Ardiot, S. Blesson, Y. Bonnin, F. Bompart, P. Colonna, A. Dhai, et al. 2015. "Improving the Quality of Host Country Ethical Oversight of International Research: The Use of a Collaborative 'Pre-Review' Mechanism for a Study of Fexinidazole for Human African Trypanosomiasis." Developing world bioethics 15 (3):241-7.

Crump, S. 2011. "African American Seniors' Perspectives on Advance Care Planning: A Virtue Ethics Community-Based Participatory Research Approach." PhD diss., University of Minnesota.

Dayal, R., A. S. Kalokhe, V. Choudhry, D. Pillai, K. Beier, and V. Patel. 2018. "Ethical and definitional considerations in research on child sexual violence in India." Bmc Public Health 18. doi: 10.1186/s12889-018-6036-y.

De Vries, J., A. Abayomi, J. Brandful, K. Littler, E. Madden, P. Marshall, O. Ouwe Missi Oukem-Boyer, and J. Seeley. 2014. "A perpetual source of DNA or something really different: Ethical issues in the creation of cell lines for African genomics research." BMC Medical Ethics 15 (1). doi: 10.1186/1472-6939-15-60.

Dean, L.,J. Njelesani, H. Smith, and I. Bates, I. (2015). “Promoting sustainable research partnerships: a mixed-method evaluation of a United Kingdom–Africa capacity

strengthening award scheme.” Health Research Policy and Systems, 13, 81. doi:10.1186/s12961-015-0071-2.

Denburg, A. E., S. Joffe, S. Gupta, S. C. Howard, R. C. Ribeiro, F. A. Antillon, R. Vasquez, and L. Sung. 2012. "Pediatric oncology research in low income countries: Ethical concepts and challenges." Pediatric Blood and Cancer 58 (4):492-497. doi: 10.1002/pbc.23419.

Deolia, S., K. Prasad, K. Chhabra, R. Kalyanpur, and S. Kalghatgi. 2014. "An insight into research ethics among dental professionals in a dental institute, India- A pilot study." Journal of Clinical and Diagnostic Research 8 (9):11-14. doi:: 10.7860/JCDR/2014/10118.4794.

DiStefano, A., L. Quitugua, B. Hui, A. Barrera-Ng, R. Peters, I. Vunileva, J. Dimaculangan, V. Tui'one, L. Takahashi, and S. P. Tanjasiri. 2013. "A community-based participatory research study of HIV and HPV vulnerabilities and prevention in two Pacific Islander Communities: Ethical challenges and solutions." Journal of Empirical Research on Human Research Ethics 8 (1):68-78. doi: 10.1525/jer.2013.8.1.68.

Embleton, L., M. A. Ott, J. Wachira, V. Naanyu, A. Kamanda, D. Makori, D. Ayuku, and P. Braitstein. 2015. "Adapting ethical guidelines for adolescent health research to street-connected children and youth in low- and middle-income countries: A case study from western Kenya." BMC Medical Ethics 16 (1). doi: 10.1186/s12910-015-0084-y.

Folayan, M., K. Peterson, B. Haire, B. Brown, K. Audu, O. Makanjuola, B. Pelemo, and V. Marsh. 2015. "Debating Ethics in HIV Research: Gaps between Policy and Practice in Nigeria." Developing world bioethics 15 (3):214-225.

Gebremariam, A., A. W. Yalew, S. Hirpa, A. Wondimagegnehu, M. Kaba, M. Assefa, I. Mitiku, E. J. Kantelhardt, A. Jemal, and A. Addissie. 2018. "Application of the rapid ethical assessment approach to enhance the ethical conduct of longitudinal population based female cancer research in an urban setting in Ethiopia." Bmc Medical Ethics 19. doi: 10.1186/s12910-018-0328-8.

Gogognon, P. A., M. Hunt, and V. Ridde. 2012. "Ethical issues of a public action-research project in Burkina Faso." Ethique et Sante 9 (4):148-55. doi: 10.1016/j.etiqe.2012.09.003.

Gogognon, P., and B. Godard. 2015. "Power Asymmetry in Global Health Research, What Are the Ethical Stakes? a Pilot Study with Researchers in Benin." Journal international de bioethique = International journal of bioethics 26 (2):103-18, 68.

Gopinath, N., J. John, E. Senthilkumar, and N. Nagappan. 2014. "Knowledge awareness and attitude about research ethics among dental faculties in India." The journal of contemporary dental practice 15 (5):608-13.

Guerra, C., M. Anderson and C. Reid. 2019. “Key Issues of Research Ethics and Integrity in Global Challenges Research: A Scoping Review Protocol.” Social Science Protocols, 2, 1-8. doi: 10.7565/ssp.2019.2653

Habib, R. R. 2019. "Ethical, methodological, and contextual challenges in research in conflict settings: The case of Syrian refugee children in Lebanon." Conflict and Health 13 (1). doi: 10.1186/s13031-019-0215-z.

Haintz, G., M. Graham, and H. McKenzie. 2015. "Navigating the ethics of cross-cultural health promotion research." Health promotion journal of Australia : official journal of Australian Association of Health Promotion Professionals  26 (3):235-240.

Harrowing, J., J. Mill, J. Spiers, J. Kulig, and W. Kipp. 2010. "Culture, context and community: Ethical considerations for global nursing research." International Nursing Review 57 (1):70-77.

Heikkilä, L. 2016. "Welfare services in enhancing good life for the Sámi: A reflection on conducting ethically responsible research and developing an improved sense of culture." International Social Work 59 (5):653-65. doi: 10.1177/0020872816646819.

Hirsh-Adler A., and C. 2017. “Research ethics with persons and groups in vulnerable condition in Mexico and Bolivia.” Praxis Sociológica 22:15-28.

House, D., I. Marete, and E. Meslin. 2016. "To research (or not) that is the question: ethical issues in research when medical care is disrupted by political action: a case study from Eldoret, Kenya." Journal of medical ethics 42 (1):61-65.

Hunt, M., P. Gogognon, and V. Ridde. 2014. "Ethical considerations related to participation and partnership: an investigation of stakeholders' perceptions of an action-research project on user fee removal for the poorest in Burkina Faso." BMC medical ethics 15: 1-13.

Hyder, A., B. Pratt, J. Ali, N. Kass, and N. Sewankambo. 2014. "The ethics of health systems research in low- and middle-income countries: A call to action." Global Public Health 9 (9):1008-1022.

Hyder, A., W. Zafar, J. Ali, R. Ssekubugu, P. Ndebele, and N. Kass. 2013. "Evaluating institutional capacity for research ethics in Africa: a case study from Botswana." BMC medical ethics 14:31.

Jegede, S. 2009. "African ethics, health care research and community and individual participation." Journal of Asian and African Studies 44 (2):239-53. doi: 10.1177/0021909608101412.

Kelley, M., T. Brazg, B. Wilfond, L. Lengua, B. Rivin, S. Martin-Herz, and D. Diekema. 2016. "Ethical challenges in research with orphans and vulnerable children: A qualitative study of researcher experiences." International Health 8 (3):187-196.

Kiragu, S., and M. Warrington. 2013. "How we used moral imagination to address ethical and methodological complexities while conducting research with girls in school against the odds in Kenya." Qualitative Research 13 (2):173-89. doi: 10.1177/1468794112451011.

Koen, J., D. Wassenaar, and N. Mamotte. 2017. "The 'over-researched community': An ethics analysis of stakeholder views at two South African HIV prevention research sites." Social Science & Medicine 194:1-9. doi: 10.1016/j.socscimed.2017.10.005.

Kombe, F. 2015. "Enhancing quality and integrity in biomedical research in Africa: An international call for greater focus, investment and standardisation in capacity strengthening for frontline staff." BMC Medical Ethics 16 (1). doi: 10.1186/s12910-015-0071-3.

Kronick, R., J. Cleveland, and C. Rousseau. 2018. "Do you want to help or go to war?: Ethical challenges of critical research in immigration detention in Canada." Journal of Social and Political Psychology 6 (2):644-60. doi: 10.5964/jspp.v6i2.926.

Lambert, J., A. Banford Witting, L. Ponnamperuma, and T. Wickrama. 2019. "Subjective Reactions to International Research Participation: An Illustration of Ethical Considerations With Women Heading Households in Sri Lanka." American Journal of Orthopsychiatry 89 (4): 518–523.

Landram, S. 2018. "A Methodological Review of the Cross-Cultural Ethical Dilemmas that Exist within the Informed Consent Process: When Ethical Considerations in Human Research Differ." PhD diss., University of Northern Colorado.

Mamotte, N. 2012. "The ethics of HIV research with people who inject drugs in Africa: A desk review." African Journal of AIDS Research 11 (1):1-8. doi: 10.2989/16085906.2012.671256.

Molyneux, C., J. Goudge, S. Russell, J. Chuma, T. Gumede, and L. Gilson. 2009. "Conducting health-related social science research in low income settings: Ethical dilemmas faced in Kenya and South Africa." Journal of International Development 21 (2):309-26. doi: 10.1002/jid.1548.

Molyneux, S., B. Tsofa, E. Barasa, M. M. Nyikuri, E. W. Waweru, C. Goodman, and L. Gilson. 2016. "Research Involving Health Providers and Managers: Ethical Issues Faced by Researchers Conducting Diverse Health Policy and Systems Research in Kenya." Developing World Bioethics 16 (3):168-77. doi: 10.1111/dewb.12130.

Moodley, K., N. Sibanda, K. February, and T. Rossouw. 2014. ""It's my blood": ethical complexities in the use, storage and export of biological samples: perspectives from South African research participants." Bmc Medical Ethics 15. doi: 10.1186/1472-6939-15-4.

Mootz, J. J., L. Taylor, M. L. Wainberg, and K. Khoshnood. 2019. "Ethical Considerations for Disseminating Research Findings on Gender-Based Violence, Armed Conflict, and Mental Health: A Case Study from Rural Uganda." Health and Human Rights 21 (1):81-92.

Motari, M., M. O. Ota, and J. M. Kirigia. 2015. "Readiness of ethics review systems for a changing public health landscape in the WHO African Region Ethics in Biomedical Research." BMC Medical Ethics 16 (1). doi: 10.1186/s12910-015-0078-9.

Nuwagaba, E. L., and P. Rule. 2015. "Navigating the ethical maze in disability research: ethical contestations in an African context." Disability and Society 30 (2):255-69. doi: 10.1080/09687599.2014.998333.

Ogundele, S., F. Ajose, Y. Kuyinu, and O. Odusanya. 2014. "Ethics and Governance of Clinical Research in a Developing Country: A Cross-Sectional Survey Among Resident Physicians in Nigeria." Pharmaceutical Medicine 28 (5) (pp 249-254), 2014 Date of Publication: 21 Oct 2014 28 (5):249-54.

Ogunrin, O., F. Daniel, and V. Ansa. 2016. “Knowledge of the Nigerian Code of Health Research Ethics Among Biomedical Researchers in Southern Nigeria.” Journal of empirical research on human research ethics 11(5): 397-407.

Ogunrin, O., F. Taiwo, and L. Frith. 2019. “Genomic Literacy and Awareness of Ethical Guidance for Genomic Research in Sub-Saharan Africa: How Prepared Are Biomedical Researchers? “Journal of Empirical Research on Human Research Ethics, 14(1): 78-87. doi:10.1177/1556264618805194

Okoli, R. C. B. 2015. "Ethical issues and dilemmas in doing research with itinerant street vending children and young people: Experiences from Nigeria." Qualitative Social Work 14 (4):538-53. doi: 10.1177/1473325014556793.

Olsen, D.P. 2003. “Ethical considerations in international nursing research: a report from the International Centre for Nursing Ethics.” Nursing Ethics, 10 (2): 122–137.

O'Neill, J., M.  Forster, L.  MacIntyre, S.  Rona,  and T. Tu'imana. 2017. “Towards an ethic of cultural responsiveness in researching Maori and Tongan children's learning in everyday settings.” International Journal of Inclusive Education 21(3): 286-298. doi:10.1080/13603116.2016.1260840.

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Pratt, B., C. Van, Y. Cong, H. Rashid, N. Kumar, A. Ahmad, R. Upshur, and B. Loff. 2014. "Perspectives from south and East Asia on clinical and research ethics: A literature review." Journal of Empirical Research on Human Research Ethics 9 (2):52-67. doi: 10.1525/jer.2014.9.2.52.

Pyles, L. 2015. "Participation and other ethical considerations in participatory action research in post-earthquake rural Haiti." International Social Work 58 (5):628-45. doi: 10.1177/0020872815581912.

Rachmawaty, R. 2017. "Ethical issues in action-oriented research in Indonesia." Nursing Ethics 24 (6):686-93. doi: 10.1177/0969733016646156.

Rennie, S., A. K. Groves, D. D. Hallfors, B. J. Iritani, F. S. Odongo, and W. K. Luseno. 2017. "The Significance of Benefit Perceptions for the Ethics of HIV Research Involving Adolescents in Kenya." Journal of Empirical Research on Human Research Ethics 12 (4):269-79. doi: 10.1177/1556264617721556.

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Sibbald, R., B. Loiseau, B. Darren, S. A. Raman, H. Dimaras, and L. C. Loh. 2016. "Maintaining Research Integrity While Balancing Cultural Sensitivity: A Case Study and Lessons From the Field." Developing World Bioethics 16 (1):55-60. doi: 10.1111/dewb.12089.

Simwinga, M., J. Porter, and V. Bond. 2018. "Who is answerable to whom? Exploring the complex relationship between researchers, community and Community Advisory Board (CAB) members in two research studies in Zambia." Critical Public Health 28(3):318-328.

Sylvestre, P., H. Castleden, D.  Martin, and M. McNally. 2018. "Thank you very much... You can leave our community now: Geographies of responsibility, relational ethics, acts of refusal, and the conflicting requirements of academic localities in indigenous research.” Acme and international Journal of critical geographies 17(3):  750-779.

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Tindana, P., C. S. Molyneux, S. Bull, and M. Parker. 2014. "Ethical issues in the export, storage and reuse of human biological samples in biomedical research: Perspectives of key stakeholders in Ghana and Kenya." BMC Medical Ethics 15 (1). doi: 10.1186/1472-6939-15-76.

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Weigmann, K. 2015. “The ethics of global clinical trials In developing countries, participation in clinical trials is sometimes the only way to access medical treatment. What should be done to avoid exploitation of disadvantaged populations?” EMBO Reports 16(5): 566–570. doi: 10.15252/embr.201540398

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