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  1. 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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  • Ethics in practice: the state of the debate on promoting the social value of global health research in resource poor settings particularly Africa.Geoffrey M. Lairumbi, Michael Parker, Raymond Fitzpatrick & Michael C. English - 2011 - BMC Medical Ethics 12 (1):22.
    BackgroundPromoting the social value of global health research undertaken in resource poor settings has become a key concern in global research ethics. The consideration for benefit sharing, which concerns the elucidation of what if anything, is owed to participants, their communities and host nations that take part in such research, and the obligations of researchers involved, is one of the main strategies used for promoting social value of research. In the last decade however, there has been intense debate within academic (...)
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  • Ethics in human subjects research: Do incentives matter?Ruth W. Grant & Jeremy Sugarman - 2004 - Journal of Medicine and Philosophy 29 (6):717 – 738.
    There is considerable confusion regarding the ethical appropriateness of using incentives in research with human subjects. Previous work on determining whether incentives are unethical considers them as a form of undue influence or coercive offer. We understand the ethical issue of undue influence as an issue, not of coercion, but of corruption of judgment. By doing so we find that, for the most part, the use of incentives to recruit and retain research subjects is innocuous. But there are some instances (...)
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  • Benefits to research subjects in international trials: Do they reduce exploitation or increase undue inducement?Angela Ballantyne - 2006 - Developing World Bioethics 8 (3):178-191.
    There is an alleged tension between undue inducement and exploitation in research trials. This paper considers claims that increasing the benefits to research subjects enrolled in international, externally-sponsored clinical trials should be avoided on the grounds that it may result in the undue inducement of research subjects. This article contributes to the debate about exploitation versus undue inducement by introducing an analysis of the available empirical research into research participants' motivations and the influence of payments on research subjects' behaviour and (...)
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  • Money for research participation: Does it jeopardize informed consent?Christine Grady - 2001 - American Journal of Bioethics 1 (2):40 – 44.
    Some are concerned about the possibility that offering money for research participation can constitute coercion or undue influence capable of distorting the judgment of potential research subjects and compromising the voluntariness of their informed consent. The author recognizes that more often than not there are multiple influences leading to decisions, including decisions about research participation. The concept of undue influence is explored, as well as the question of whether or not there is something uniquely distorting about money as opposed to (...)
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  • Research at the Auction Block: Problems for the Fair Benefits Approach to International Research.Alex John London & Kevin J. S. Zollman - 2010 - Hastings Center Report 40 (4):34-45.
    The “fair benefits” approach to international research is designed to produce results that all can agree are fair without taking a stand on divisive questions of justice. But its appealing veneer of collaboration masks ambiguities at both a conceptual and an operational level. An attempt to put it into practice would look a lot like an auction, leaving little reason to think the outcomes will satisfy even minimal conditions of fairness.
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  • (1 other version)Defining and Describing Benefit Appropriately in Clinical Trials.Nancy M. P. King - 2000 - Journal of Law, Medicine and Ethics 28 (4):332-343.
    Institutional review boards and investigators are used to talking about risks of harm. Both low risks of great harm and high risks of small harm must be disclosed to prospective subjects and should be explained and categorized in ways that help potential subjects to understand and weigh them appropriately. Everyone on an IRB has probably spent time at meetings arguing over whether a three-page bulleted list of risk description is helpful or overkill for prospective subjects. Yet only a small fraction (...)
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  • Forms of benefit sharing in global health research undertaken in resource poor settings: a qualitative study of stakeholders' views in Kenya.Geoffrey Lairumbi, Michael Parker, Raymond Fitzpatrick & Michael English - 2012 - Philosophy, Ethics, and Humanities in Medicine 7:7.
    Background Increase in global health research undertaken in resource poor settings in the last decade though a positive development has raised ethical concerns relating to potential for exploitation. Some of the suggested strategies to address these concerns include calls for providing universal standards of care, reasonable availability of proven interventions and more recently, promoting the overall social value of research especially in clinical research. Promoting the social value of research has been closely associated with providing fair benefits to various stakeholders (...)
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  • The Ancillary‐Care Responsibilities of Medical Researchers: An Ethical Framework for Thinking about the Clinical Care that Researchers Owe Their Subjects.Henry S. Richardson & Leah Belsky - 2004 - Hastings Center Report 34 (1):25-33.
    Researchers do not owe their subjects the same level of care that physicians owe patients, but they owe more than merely what the research protocol stipulates. In keeping with the dynamics of the relationship between researcher and subject, they have limited but substantive fiduciary obligations.
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  • Participation as commodity, participation as gift.Tod Chambers - 2001 - American Journal of Bioethics 1 (2):48.
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  • Moral Standards for Research in Developing Countries from "Reasonable Availability" to "Fair Benefits".Maged El Setouhy, Tsiri Agbenyega, Francis Anto, Christine Alexandra Clerk, Kwadwo A. Koram, Michael English, Rashid Juma, Catherine Molyneux, Norbert Peshu, Newton Kumwenda, Joseph Mfutso-Bengu, Malcolm Molyneux, Terrie Taylor, Doumbia Aissata Diarra, Saibou Maiga, Mamadou Sylla, Dione Youssouf, Catherine Olufunke Falade, Segun Gbadegesin, Reidar Lie, Ferdinand Mugusi, David Ngassapa, Julius Ecuru, Ambrose Talisuna, Ezekiel Emanuel, Christine Grady, Elizabeth Higgs, Christopher Plowe, Jeremy Sugarman & David Wendler - 2004 - Hastings Center Report 34 (3):17.
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  • ""Moral Standards for Research in Developing Countries from" Reasonable Availability" to" Fair Benefits".Maged El Setouhy, Tsiri Agbenyega, Francis Anto, Christine Alexandra Clerk, Kwadwo A. Koram, Michael English, Rashid Juma, Catherine Molyneux, Norbert Peshu & Newton Kumwenda - forthcoming - Hastings Center Report.
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  • Benefits and payments for research participants: Experiences and views from a research centre on the Kenyan coast. [REVIEW]Sassy Molyneux, Stephen Mulupi, Lairumbi Mbaabu & Vicki Marsh - 2012 - BMC Medical Ethics 13 (1):13-.
    BackgroundThere is general consensus internationally that unfair distribution of the benefits of research is exploitative and should be avoided or reduced. However, what constitutes fair benefits, and the exact nature of the benefits and their mode of provision can be strongly contested. Empirical studies have the potential to contribute viewpoints and experiences to debates and guidelines, but few have been conducted. We conducted a study to support the development of guidelines on benefits and payments for studies conducted by the KEMRI-Wellcome (...)
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  • ‘She's My Sister‐In‐Law, My Visitor, My Friend’ – Challenges of Staff Identity in Home Follow‐Up in an HIV Trial in W estern K enya.Philister Adhiambo Madiega, Gemma Jones, Ruth Jane Prince & Paul Wenzel Geissler - 2013 - Developing World Bioethics 13 (1):21-29.
    Identities ascribed to research staff in face-to-face encounters with participants have been raised as key ethical challenge in transnational health research. ‘Misattributed’ identities that do not just deviate from researchers' self-image, but obscure unequivocal aspects of researcher identity – e.g. that they are researchers – are a case of such ethical problem. Yet, the reasonable expectation of unconcealed identity can conflict with another ethical premise: confidentiality; this poses challenges to staff visiting participants at home. We explore these around a case (...)
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  • Evolving Friendships and Shifting Ethical Dilemmas: Fieldworkers’ Experiences in a Short Term Community Based Study in K enya.Dorcas M. Kamuya, Sally J. Theobald, Patrick K. Munywoki, Dorothy Koech, Wenzel P. Geissler & Sassy C. Molyneux - 2013 - Developing World Bioethics 13 (1):1-9.
    Fieldworkers (FWs) are community members employed by research teams to support access to participants, address language barriers, and advise on culturally appropriate research conduct. The critical role that FWs play in studies, and the range of practical and ethical dilemmas associated with their involvement, is increasingly recognised. In this paper, we draw on qualitative observation and interview data collected alongside a six month basic science study which involved a team of FWs regularly visiting 47 participating households in their homes. The (...)
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  • Justice for the Professional Guinea Pig.Trudo Lemmens & Carl Elliott - 2001 - American Journal of Bioethics 1 (2):51-53.
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  • For-Profit Clinical Trials in Developing Countries—Those Troublesome Patient Benefits.Udo Schuklenk - 2010 - American Journal of Bioethics 10 (6):52-54.
    (2010). For-Profit Clinical Trials in Developing Countries—Those Troublesome Patient Benefits. The American Journal of Bioethics: Vol. 10, No. 6, pp. 52-54.
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  • Getting personal: Ethics and identity in global health research.Christian Simon & Maghboeba Mosavel - 2011 - Developing World Bioethics 11 (2):82-92.
    ‘Researcher identity’ affects global health research in profound and complex ways. Anthropologists in particular have led the way in portraying the multiple, and sometimes tension-generating, identities that researchers ascribe to themselves, or have ascribed to them, in their places of research. However, the central importance of researcher identity in the ethical conduct of global health research has yet to be fully appreciated. The capacity of researchers to respond effectively to the ethical tensions surrounding their identities is hampered by lack of (...)
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  • Community Members as Recruiters of Human Subjects: Ethical Considerations.Christian Simon & Maghboeba Mosavel - 2010 - American Journal of Bioethics 10 (3):3-11.
    Few studies have considered in detail the ethical issues surrounding research in which investigators ask community members to engage in research subject recruitment within their own communities. Peer-driven recruitment and its variants are useful for accessing and including certain populations in research, but also have the potential to undermine the ethical and scientific integrity of community-based research. This paper examines the ethical implications of utilizing community members as recruiters of human subjects in the context of PDR, as well as the (...)
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  • More on benchmarks of fairness: Response to Ballantyne.Trisha Phillips - 2010 - Bioethics 26 (1):49-56.
    This paper challenges the fitness of Angela Ballantyne's proposed theory of exploitation by situating her ‘fair risk account’ in an ongoing dialogue about the adequacy conditions for benchmarks of fairness. It identifies four adequacy conditions: (1) the ability to focus on level rather than type of benefit; (2) the ability to focus on micro-level rather than macro-level fairness; (3) the ability to prevent discrimination based on need; and (4) the ability to prescribe a certain distribution as superior to all others. (...)
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