IRB

Increasingly, North based graduate students are seeking South based institutional homes whilst undertaking ethnographic research. Looking from a place in the global South, the article considers how requests to host such students influence, and are influenced by, both local and northern research ethics procedures. In particular the article focuses on the globalisation of the Institutional Review Board principle in defining much of the international landscape of ethical oversight, mainly because so much international health research funding is linked to northern institutions. We draw on a case study, the setting being an anthropological investigation by a northern researcher into health issues conducted in South Africa. The northern institution made a large investment in ethical oversight, but oriented it entirely towards limiting its legal liability. It was little concerned by ethical considerations posed by South African colleagues. This appears to have occurred because they were working from seemingly incommensurable reference points. We argue that, if we are to benefit from transnational excursions, debate about ethics must occur at a cross-national level. With research becoming globalised, and with varying actors across the globe, we are offered the possibility of transforming the currently dominant paradigm, based as it is on a logic of a northern donor and southern recipients of knowledge, to a more collaborative and equitable process.

Macdonald, H. and A. Spiegel. 2013. ‘Distraction from the real difficulties’: Ethical deliberations in international health research, Anthropology Southern Africa, 36(3&4): 146-154.

The increasing use of information and communication technologies (ICTs) to help facilitate neuroscience adds a new level of complexity to the question of how ethical issues of such research can be identified and addressed. Current research ethics practice, based on ethics reviews by institutional review boards (IRB) and underpinned by ethical principlism, has been widely criticized. In this article, we develop an alternative way of approaching ethics in neuro-ICT research, based on discourse ethics, which implements Responsible Research and Innovation (RRI) through dialogues. We draw on our work in Ethics Support, using the Human Brain Project (HBP) as empirical evidence of the viability of this approach.

Life sciences research is increasingly international and data-intensive. Researchers work in multi-jurisdictional teams or formally established research consortia to exchange data and conduct research using computation of multiple sources and volumes of data at multiple sites and through multiple pathways. Despite the internationalization and data intensification of research, the same ethics review process as applies to single-site studies in one country tends to apply to multi-site studies in multiple countries. Because of the standard requirement for multi-jurisdictional or multi-site ethics review, international research projects are subjected to multiple ethics reviews of the same research protocol. Consequently, the reviews may be redundant and resource-consuming, whilst the opinions delivered by ethics committees may be inconsistent both within and across jurisdictions. In this article, we present findings based on interviews conducted with international experts in research ethics on the topic of ethics review mutual recognition. We explore the issues associated with ethics committee review of multi-jurisdictional data-intensive research projects, identifying current problems, real-life experiences, and potential solutions that are both bottom-up (via researchers, participants and publics) and top-down (via statutory regulation), as well as challenges in achieving both. On the whole, participants recommended multiple changes to the current ethics review

This article argues for expanding the ethical frame of concern in disaster research from the early phases of site access to longer-term issues that may arise in the field. Drawing on ethical theory, these arguments are developed in five sections. First, we identify the philosophical roots of ethical principles used in social science research. Second, we discuss how ethical concerns span the entire lifecycle of disaster-related research projects but are not fully addressed in the initial protocols for gaining Institutional Research Board (IRB) approval. Third, we introduce the idea of the philosophically- informed “ethical toolkit,” established to help build awareness of moral obligations and to provide ways to navigate ethical confusion to reach sound research decisions. Specifically, we use the work of W. D. Ross to introduce a template of moral considerations that include fidelity, reparation, gratitude, justice, beneficence, self- improvement, and non-maleficence. We suggest that in the absence of a clear framework that researchers can use to think through ethical dilemmas as they arise, Ross’ pluralist approach to ethical problem solving offers flexibility and clarity, and, at the same time, leaves space to apply our own understanding of the context in question. Fourth, we draw on six examples from our respective research studies conducted following Hurricane Katrina. Using these examples, we discuss how, in retrospect, we can apply Ross’ moral considerations to the ethical issues raised including: (1) shifting vulnerability among disaster  survivors,  (2)  the  expectations  of  participants, and  (3)  concerns  about reciprocity in long-term fieldwork. Fifth, we consider how the ethical toolkit we are proposing may improve the quality of research and research relationships.

Recently, there have been increasing numbers of activities labeled as either quality improvement (QI) or comparative
effectiveness research (CER), both of which are designed to learn what works and what does not in routine clinical care
settings. These activities can create confusion for researchers, Institutional Review Board members, and other stakeholders
as they try to determine which activities or components of activities constitute clinical practices and which constitute
clinical research requiring ethical oversight and informed consent. We conducted a series of semi-structured focus groups
with QI and CER professionals to understand their experiences and views of the ethical and regulatory challenges that exist
as well as the formal or informal practices and criteria they and their institutions use to address these issues. We found
that most participants have experienced challenges related to the ethical oversight of QI and CER activities, and many
believe that current regulatory criteria for distinguishing clinical practice from clinical research requiring ethical oversight
are confusing. Instead, many participants described other criteria that they believe are more ethically appropriate. Many
also described developing formal or informal practices at their institutions to navigate which activities require ethical
oversight. However, these local solutions do not completely resolve the issues caused by the blurring of clinical practice
and clinical research, raising the question of whether more foundational regulatory changes are needed.