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 (...) study of ‘follow-up’ staff, observed during an ethnographic study of a Kenyan HIV ‘trial community’, which included participant observation, conversations, and interviews with staff (n = 79) and participants (n = 89). We found that because of the need to maintain confidentiality and because of some suspicions towards researchers, research staff drew upon alternative identities – presenting themselves to non-participants as relatives or friends, rather than as researchers. Several staff experienced this as necessary but uncomfortable. Simultaneously, staff and participants forged close relations in line with their fictional identities, which however also posed challenges because they entailed personal responsibilities that were difficult to live up to, due to limited resources, and the trial's limited duration. Similar challenges may arise in transnational HIV treatment programmes and should be explored further in that context. (shrink)
Community Engagement (CE) has been presented by bio-ethicists and scientists as a straightforward and unequivocal good which can minimize the risks of exploitation and ensure a fair distribution of research benefits in developing countries. By means of ethnographic fieldwork undertaken in Kenya between 2007 and 2009 we explored how CE is understood and enacted in paediatric vaccine trials conducted by the Kenyan Medical Research Institute and the US Centers for Disease Control (KEMRI/CDC). In this paper we focus on the role (...) of paid volunteers who act as an interface between villagers KEMRI/CDC. Village Reporters’ (VRs) position of being both with the community and with KEMRI/CDC is advantageous for the conduct of trials. However it is also problematic in terms of exercising trust, balancing allegiances and representing community views. VRs role is shaped by ambiguities related to their employment status and their dual accountability to researchers and their villages. VRs are understandably careful to stress their commitment to self-less community service since it augments their respectability at community level and opens up opportunities for financial gain and self-development. Simultaneously VRs association with KEMRI/CDC and proximity to trial participants requires them to negotiate implicit and explicit expectations for material and medical assistance in a cultural setting in which much importance is placed on sharing and mutuality. To ensure continuity of productive interactions between VRs, and similar community intermediaries, and researchers, open discussion is needed about the problematic aspects of relational ethics, issues concerning undue influence, power relations and negotiating expectations. (shrink)
"This is an extremely interesting and innovative collection with unusual empirical richness, with ethical and epistemological discussions cutting across ...
There is wide agreement that community engagement is important for many research types and settings, often including interaction with ‘representatives’ of communities. There is relatively little published experience of community engagement in international research settings, with available information focusing on Community Advisory Boards or Groups (CAB/CAGs), or variants of these, where CAB/G members often advise researchers on behalf of the communities they represent. In this paper we describe a network of community members (‘KEMRI Community Representatives’, or ‘KCRs’) linked to a (...) large multi-disciplinary research programme on the Kenyan Coast. Unlike many CAB/Gs, the intention with the KCR network has evolved to be for members to represent the geographical areas in which a diverse range of health studies are conducted through being typical of those communities. We draw on routine reports, self-administered questionnaires and interviews to: 1) document how typical KCR members are of the local communities in terms of basic characteristics, and 2) explore KCR's perceptions of their roles, and of the benefits and challenges of undertaking these roles. We conclude that this evolving network is a potentially valuable way of strengthening interactions between a research institution and a local geographic community, through contributing to meeting intrinsic ethical values such as showing respect, and instrumental values such as improving consent processes. However, there are numerous challenges involved. Other ways of interacting with members of local communities, including community leaders, and the most vulnerable groups least likely to be vocal in representative groups, have always been, and remain, essential. (shrink)
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 (...) qualitative study documented how relationships between field workers and research participants were initiated, developed and evolved over the course of the study, the shifting dilemmas FWs faced and how they handled them. Even in this one case study, we see how the complex and evolving relationships between fieldworkers and study participants had important implications for consent processes, access to benefits and mutual understanding and trust. While the precise issues that FWs face are likely to depend on the type of research and the context in which that research is being conducted, we argue that appropriate support for field workers is a key requirement to strengthen ethical research practice and for the long term sustainability of research programmes. (shrink)
In 1764, Kant published his Observations on the Feeling of the Beautiful and the Sublime and in 1790 his influential third Critique , the Critique of the Power of Judgment . The latter contains two parts, the 'Critique of the Aesthetic Power of Judgment' and the 'Critique of the Teleological Power of Judgment'. They reveal a new principle, namely the a priori principle of purposiveness ( Zweckmäßigkeit ) of our power of judgment, and thereby offer new a priori grounds for (...) beauty and biology within the framework of Kant's transcendental philosophy. They also unite the previous two Critiques , the Critique of Pure Reason and the Critique of Practical Reason . Besides contributing to general and systematic aspects within his transcendental philosophy, Kant's aesthetics also offers new insights into old problems. It deals with feeling versus experience, subjectivity versus objectivity, disinterested pleasure, aesthetic universality, free and adherent beauty, the sensus communis , genius, aesthetic ideas, beauty as the symbol of morality, beauty of nature versus beauty of art, the sublime, and the supersensible. In this article I will limit myself to this critical aesthetics of Kant. But I will also discuss the ugly and the possibility of beauty in mathematics and see whether Kant's theory can successfully explain or deal with them. I will also compare his theory with philosophical ideas from a very different tradition, namely from Confucius, not only as a challenge to Kant's theory, but also because there is a growing interest from the Chinese side in combining ideas from Confucius and Kant, an interest that might well become influential in both East and West during the 21st century. (shrink)
Das Aussprechen eines Wortes ist gleichsam ein Anschlagen einer Taste auf dem Vorstellungsklavier. (Uttering a word is like striking a note on the keyboard of the imagination.) (PU §6)Polonius: What do you read, my lord?Hamlet: Words, words, words!(Hamlet, act 2, scene 2)Wittgenstein in his later years thought about experiences of meaning and aspect change. Do such experiences matter? Or would a meaning- or aspect-blind person not lose much? Moreover, is this a matter of aesthetics or epistemology? To get a better (...) perspective on these matters, I will introduce distinctions between certain subjective and objective aspects, namely feelings of our inner psychological states versus fine-tuned objective experiences of the outer world. It seems to me that in his discussion of meaning-blindness, Wittgenstein unhappily floats between these two extremes, the subjective and the objective. I will also introduce some notions from Kant's aesthetics, to get a better understanding of the interplay between feeling and meaning. This will shed some new light on Wittgenstein's enquiry into meaning- and aspect-blindness. (shrink)
This is an essay about language, thought, and culture in general, and about Ancient Greek and Classical Chinese in particular. It is about the Sapir-Whorf hypothesis, which says that language influences the mind, and applies this hypothesis to Greek and Chinese. It is also an essay in comparative philosophy as well as a contribution to the history of ideas. From the language side, I rely on the nineteenth-century German linguist Wilhelm von Humboldt, and from the culture side on the contemporary (...) French sinologist François Jullien. Combining their ideas, I give substance to the Sapir-Whorf hypothesis and explain some of Jullien's claims about the historical and political developments of Chinese culture. The central .. (shrink)
The notion of the a priori underwent several changes since the time it came into existence in the Middle Ages. Originally it had been used to mark a certain form of argument, an argument that proceeds from what is prior to what is later, from cause to effect: demonstratio procedens ex causis ad effectum = demonstratio a priori. But this changed with Kant, for whom it meant not a form of argument but rather some special kind of knowledge (or elements (...) thereof), namely knowledge that (a) is independent of particular experiences and (b) that makes experience in general (Erfahrung überhaupt) possible. Tied up with consciousness and the transcendental unity of apperception, Kant"s understanding of the a priori was in the spirit of his transcendental philosophy. But this understanding changed again with the rise of analytic philosophy, in which we still find the first characteristic but not the second anymore. The idea of Erfahrung überhaupt was given up, partly because one naturally wondered what exactly this notion of experience in general, or experience universally conceived, should be. Where should we get it from, if not by way of abstraction and generalization from individual cases of experience? And would this not make it an empirical concept, so that the whole project of asking for the conditions of its possibility would not lead us to the kind of certainty, necessity and universality we expect from a priori knowledge? There would be no guarantee that in the future we would not make discoveries that would give us new kinds of experiences or that would show us our experiences in a new light. Thus, we would have to admit that these experiences did not satisfy the conditions of experience we had set up originally. The a priori conditions would have to be revised. (shrink)
This book is not another lecture about the greed, self-centeredness, and self-aggrandizement of managers who perpetrated and profited from the failures of their ...
The main ideas in this paper can be summarized in the following three points. (1) Openness, indeterminacy, and exemplarity are elements of both Kant's aesthetics and Wittgenstein's notion of language games. (2) These elements are essential to what makes a person. They are necessary in processes of decision-making and in the development of a person. (3) Such aspects were in the center of discussion during the eighteenth and nineteenth centuries in Europe, especially in the tradition of the so-called Bildungsroman. Unfortunately, (...) they tend to be forgotten nowadays. (shrink)
