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. (...) It aimed to inform best practices in recruiting participants into genomic research.MethodsA qualitative rapid ethical assessment was undertaken. Fifty-five semi-structured interviews were conducted with the parents of research participants. An additional nine semi-structured interviews were conducted with senior research scientists, research assistants and with a member of an ethics committee. A focus group with five parents of research participants and direct observations of four consent processes were also conducted. French and translated English transcripts were descriptively and thematically coded using OpenCode software.ResultsParticipants’ parents in the MalariaGEN study had differing understandings of the causes of malaria, the rationale for collecting blood samples, the purposes of the study and the kinds of information the study would generate. Genomic aspects of the research, including the gene/environment interaction underlying susceptibility or resistance to severe malaria, proved particularly challenging to explain and understand.ConclusionsThis study identifies a number of areas to be addressed in the design of consent processes for genomic research, some of which require careful ethical analysis. These include determining how much information should be provided about differing aspects of the research and how best to promote understandings of genomic research. We conclude that it is important to build capacity in the design and conduct of effective and appropriate consent processes for genomic research in low and middle-income settings. Additionally, consideration should be given to the role of review committees and community consultation activities in protecting the interests of participants in genomic research. (shrink)

BackgroundGenome-wide association studies provide a powerful means of identifying genetic variants that play a role in common diseases. Such studies present important ethical challenges. An increasing number of GWAS is taking place in lower income countries and there is a pressing need to identify the particular ethical challenges arising in such contexts. In this paper, we draw upon the experiences of the MalariaGEN Consortium to identify specific ethical issues raised by such research in Africa, Asia and Oceania.DiscussionWe explore ethical issues (...) in three key areas: protecting the interests of research participants, regulation of international collaborative genomics research and protecting the interests of scientists in low income countries. With regard to participants, important challenges are raised about community consultation and consent. Genomics research raises ethical and governance issues about sample export and ownership, about the use of archived samples and about the complexity of reviewing such large international projects. In the context of protecting the interests of researchers in low income countries, we discuss aspects of data sharing and capacity building that need to be considered for sustainable and mutually beneficial collaborations.SummaryMany ethical issues are raised when genomics research is conducted on populations that are characterised by lower average income and literacy levels, such as the populations included in MalariaGEN. It is important that such issues are appropriately addressed in such research. Our experience suggests that the ethical issues in genomics research can best be identified, analysed and addressed where ethics is embedded in the design and implementation of such research projects. (shrink)

Initial responses to questionnaires used to assess participants' understanding of informed consent for malaria vaccine trials conducted in the United States and Mali were tallied. Total scores were analyzed by age, sex, literacy (if known), and location. Ninety-two percent (92%) of answers by United States participants and 85% of answers by Malian participants were correct. Questions more likely to be answered incorrectly in Mali related to risk, and to the type of vaccine. For adult participants, independent predictors of higher scores (...) were younger age and female sex in the United States, and male sex in Mali. Scores in the United States were higher than in Mali (P = 0.005). Despite this difference participants at both sites were well informed overall. Although interpretation must be qualified because questionnaires were not intended as research tools and were not standardized among sites, these results do not support concerns about systematic low understanding among research participants in developing versus developed countries. (shrink)

This paper defends what the philosopher Merleau Ponty coins ‘the imaginary texture of the real’. It is suggested that the imagination is at work in the everyday world which we perceive, the world as it is for us. In defending this view a concept of the imagination is invoked which has both similarities with and differences from, our everyday notion. The everyday notion contrasts the imaginary and the real. The imaginary is tied to the fictional or the illusory. Here it (...) will be suggested, following both Kant and Strawson, that there is a more fundamental working of the imagination, present in both perception and the constructions of fictions. What Kant and Strawson failed to make clear, however, was that the workings of the imagination within the perceived world, gives that world, an affective logic. The domain of affect is that of emotions, feelings and desire, and to claim such an affective logic in the world we experience, is to point out that it has salience and significance for us. Such salience suggests and demands the desiring and sometimes fearful responses we make to it; the shape of the perceived world echoed in the shapes our bodies take within it. (shrink)

The word ‘freedom’ leads a double life. As a rallying cry in the mouths of politicians and publicists, it features in speech acts which inspire men to brave endeavours. Freedom or death are the proffered alternatives, and they are generally linked with fatiguing dispositions such as vigilance. As a philosophical concept , on the other hand, freedom is a territory in which battles are fought about such issues as positivity and negativity, virtue, determinism and the character of the will. There (...) is remarkably little connection between these two lives. Philosophers do not seem to take much interest in courage, and politicians do not tarry to specify whether it is negative or positive liberty they are talking about. (shrink)

Using an economic bargaining game, we tested for the existence of two phenomena related to social norms, namely norm manipulation – the selection of an interpretation of the norm that best suits an individual – and norm evasion – the deliberate, private violation of a social norm. We found that the manipulation of a norm of fairness was characterized by a self-serving bias in beliefs about what constituted normatively acceptable behaviour, so that an individual who made an uneven bargaining offer (...) not only genuinely believed it was fair, but also believed that recipients found it fair, even though recipients of the offer considered it to be unfair. In contrast, norm evasion operated as a highly explicit process. When they could do so without the recipient's knowledge, individuals made uneven offers despite knowing that their behaviour was unfair. (shrink)

I expect every reader knows the hackneyed old joke: ‘What is matter? Never mind. What is mind? No matter.’ Antique as this joke is, it none the less points to an interesting question. For the so-called mind–body dichotomy, which has been raised to almost canonical status in post-Cartesian philosophy, is not in fact at all easy to draw or to defend. This of course means that ‘the mind–body problem’ is difficult both to describe and to solve—or rather, as I would (...) prefer, to dissolve. (shrink)

Quentin Skinner's The Foundations of Modern Political Thought is primarily of interest to philosophers not for its excellent account of European thought about the state but for the self–conscious philosophy which has gone into it. It is a rare historian who pauses to get his philosophy in order before he embarks on a major enterprise, though such a policy is possibly less unusual in intellectual history than in other fields. In Skinner's case, however, this order of doing things has been (...) pushed so far that he counts as a philosopher in his own right, rather than as merely someone who is unusually careful to think about what he is doing. The publication of this major work thus provides a convenient opportunity to make a few remarks about the relation between historical theory and practice. (shrink)