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  1. Understandings of genomic research in developing countries: a qualitative study of the views of MalariaGEN participants in Mali.Karim Traore, Susan Bull, Alassane Niare, Salimata Konate, Mahamadou A. Thera, Dominic Kwiatkowski, Michael Parker & Ogobara K. Doumbo - 2015 - BMC Medical Ethics 16 (1):1-10.
    BackgroundObtaining informed consent for participation in genomic research in low-income settings presents specific ethical issues requiring attention. These include the challenges that arise when providing information about unfamiliar and technical research methods, the implications of complicated infrastructure and data sharing requirements, and the potential consequences of future research with samples and data. This study investigated researchers’ and participants’ parents’ experiences of a consent process and understandings of a genome-wide association study of malaria involving children aged five and under in Mali. (...)
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  • Seeking consent to genetic and genomic research in a rural Ghanaian setting: a qualitative study of the MalariaGEN experience. [REVIEW]P. Tindana, S. Bull, L. Amenga-Etego, J. Vries, R. Aborigo, K. Koram, D. Kwiatkowski & M. Parker - 2012 - BMC Medical Ethics 13 (1):15-15.
    Seeking consent for genetic and genomic research can be challenging, particularly in populations with low literacy levels, and in emergency situations. All of these factors were relevant to the MalariaGEN study of genetic factors influencing immune responses to malaria in northern rural Ghana. This study sought to identify issues arising in practice during the enrolment of paediatric cases with severe malaria and matched healthy controls into the MalariaGEN study.
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  • Volunteer experiences and perceptions of the informed consent process: Lessons from two HIV clinical trials in Uganda.Agnes Ssali, Fiona Poland & Janet Seeley - 2015 - BMC Medical Ethics 16 (1):1-14.
    BackgroundInformed consent as stipulated in regulatory human research guidelines requires that a volunteer is well-informed about what will happen to them in a trial. However researchers are faced with a challenge of how to ensure that a volunteer agreeing to take part in a clinical trial is truly informed. We conducted a qualitative study among volunteers taking part in two HIV clinical trials in Uganda to find out how they defined informed consent and their perceptions of the trial procedures, study (...)
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  • Collaborative International Research: Ethical and Regulatory Issues Pertaining to Human Biological Materials at a South African Institutional Research Ethics Committee.Aslam Sathar, Amaboo Dhai & Stephan Linde - 2013 - Developing World Bioethics 14 (3):150-157.
    Human Biological Materials are an invaluable resource in biomedical research. Objective To determine if researchers and a Research Ethics Committee at a South African institution addressed ethical issues pertaining to HBMs in collaborative research with developed countries. Study Design Ethically approved retrospective cross-sectional descriptive audit. Results Of the 1305 protocols audited, 151 fulfilled the study's inclusion criteria. Compared to other developed countries, a majority of sponsors were from the USA . The principle investigators in all 151 protocols informed the REC (...)
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  • Collaborative International Research: Ethical and Regulatory Issues Pertaining to Human Biological Materials at a S outh A frican Institutional Research Ethics Committee.Aslam Sathar, Amaboo Dhai & Stephan van der Linde - 2014 - Developing World Bioethics 14 (3):150-157.
    Human Biological Materials (HBMs) are an invaluable resource in biomedical research.ObjectiveTo determine if researchers and a Research Ethics Committee (REC) at a South African institution addressed ethical issues pertaining to HBMs in collaborative research with developed countries.Study DesignEthically approved retrospective cross‐sectional descriptive audit.ResultsOf the 1305 protocols audited, 151 (11.57%) fulfilled the study's inclusion criteria. Compared to other developed countries, a majority of sponsors (90) were from the USA (p = 0.0001). The principle investigators (PIs) in all 151 protocols informed the (...)
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  • Comparison of group counseling with individual counseling in the comprehension of informed consent: a randomized controlled trial.Rajiv Sarkar, Thuppal V. Sowmyanarayanan, Prasanna Samuel, Azara S. Singh, Anuradha Bose, Jayaprakash Muliyil & Gagandeep Kang - 2010 - BMC Medical Ethics 11 (1):8-.
    BackgroundStudies on different methods to supplement the traditional informed consent process have generated conflicting results. This study was designed to evaluate whether participants who received group counseling prior to administration of informed consent understood the key components of the study and the consent better than those who received individual counseling, based on the hypothesis that group counseling would foster discussion among potential participants and enhance their understanding of the informed consent.MethodsParents of children participating in a trial of nutritional supplementation were (...)
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  • Experiences with community engagement and informed consent in a genetic cohort study of severe childhood diseases in Kenya.M. Mlamba Albert, M. Kamuya Dorcas, M. Marsh Vicki, N. Williams Thomas & S. Molyneux Sassy - 2010 - BMC Medical Ethics 11 (1):13.
    Background The potential contribution of community engagement to addressing ethical challenges for international biomedical research is well described, but there is relatively little documented experience of community engagement to inform its development in practice. This paper draws on experiences around community engagement and informed consent during a genetic cohort study in Kenya to contribute to understanding the strengths and challenges of community engagement in supporting ethical research practice, focusing on issues of communication, the role of field workers in 'doing ethics' (...)
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  • “I passed the test!” Evidence of diagnostic misconception in the recruitment of population controls for an H3Africa genomic study in Cape Town, South Africa.Francis Masiye, Bongani Mayosi & Jantina de Vries - 2017 - BMC Medical Ethics 18 (1):12.
    Advances in genetic and genomic research have introduced challenges in obtaining informed consent for research in low and middle-income settings. However, there are only few studies that have explored challenges in obtaining informed consent in genetic and genomic research in Africa and none in South Africa. To start filling this gap, we conducted an empirical study to investigate the efficacy of informed consent procedures for an H3Africa genomic study on Rheumatic Heart Disease at the University of Cape Town in South (...)
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  • The Individual and the Community in International Genetic Research.Patricia A. Marshall - 2004 - Journal of Clinical Ethics 15 (1):76-86.
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  • Experiences with community engagement and informed consent in a genetic cohort study of severe childhood diseases in Kenya.V. M. Marsh, D. M. Kamuya, A. M. Mlamba, T. N. Williams & S. S. Molyneux - 2010 - BMC Medical Ethics 11 (1):13-13.
    BackgroundThe potential contribution of community engagement to addressing ethical challenges for international biomedical research is well described, but there is relatively little documented experience of community engagement to inform its development in practice. This paper draws on experiences around community engagement and informed consent during a genetic cohort study in Kenya to contribute to understanding the strengths and challenges of community engagement in supporting ethical research practice, focusing on issues of communication, the role of field workers in 'doing ethics' on (...)
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  • Seeking consent to genetic and genomic research in a rural Ghanaian setting: A qualitative study of the MalariaGEN experience. [REVIEW]Paulina Tindana, Susan Bull, Lucas Amenga-Etego, Jantina de Vries, Raymond Aborigo, Kwadwo Koram, Dominic Kwiatkowski & Michael Parker - 2012 - BMC Medical Ethics 13 (1):15-.
    Background: Seeking consent for genetic and genomic research can be challenging, particularly in populations with low literacy levels, and in emergency situations. All of these factors were relevant to the MalariaGEN study of genetic factors influencing immune responses to malaria in northern rural Ghana. This study sought to identify issues arising in practice during the enrolment of paediatric cases with severe malaria and matched healthy controls into the MalariaGEN study. Methods: The study used a rapid assessment incorporating multiple qualitative methods (...)
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  • Culture and genetic screening in Africa.Ayodele S. Jegede - 2009 - Developing World Bioethics 9 (3):128-137.
    Africa is a continent in transition amidst a revival of cultural practices. Over previous years the continent was robbed of the benefits of medical advances by unfounded cultural practices surrounding its cultural heritage. In a fast moving field like genetic screening, discussions of social and policy aspects frequently need to take place at an early stage to avoid the dilemma encountered by Western medicine. This paper, examines the potential challenges to genetic screening in Africa. It discusses how cultural practices may (...)
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  • Bioethical reflexivity and requirements of valid consent: conceptual tools.John Barugahare - 2019 - BMC Medical Ethics 20 (1):44.
    Despite existing international, regional and national guidance on how to obtain valid consent to health-related research, valid consent remains both a practical and normative challenge. This challenge persists despite additional evidence-based guidance obtained through conceptual and empirical research in specific localities on the same subject. The purpose of this paper is to provide an account for why, despite this guidance, this challenge still persist and suggest conceptual resources that can help make sense of this problem and eventually mitigate it’. This (...)
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  • The informed consent process in a rural African setting: a case study of the Kassena-Nankana district of Northern Ghana.N. Kass & P. Akweongo - 2005 - IRB: Ethics & Human Research 28 (3):1-6.
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  • Tailoring consent to context: designing an appropriate consent process for a biomedical study in a low income setting.Fasil Tekola, Susan J. Bull, Bobbie Farsides, Melanie J. Newport, Adebowale Adeyemo, Charles N. Rotimi & Gail Davey - unknown
    Background Currently there is increasing recognition of the need for research in developing countries where disease burden is high. Understanding the role of local factors is important for undertaking ethical research in developing countries. We explored factors relating to information and communication during the process of informed consent, and the approach that should be followed for gaining consent. The study was conducted prior to a family-based genetic study among people with podoconiosis (non-filarial elephantiasis) in southern Ethiopia. Methodology/Principal Findings We adapted (...)
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  • Reformed consent: adapting to new media and research participant preferences.J. Henry, B. W. Palmer, L. Palinkas, D. K. Glorioso, M. P. Caligiuri & D. V. Jeste - 2008 - IRB: Ethics & Human Research 31 (2):1-8.
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