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 (...) the ground and the challenges of community consultation.MethodsThe findings are based on action research methods, including analysis of community engagement documentation and the observations of the authors closely involved in their development and implementation. Qualitative and quantitative content analysis has been used for documentation of staff meetings and trainings, a meeting with 24 community leaders, and 40 large public and 70 small community group meetings. Meeting minutes from a purposive sample of six community representative groups have been analysed using a thematic framework approach.ResultsField workers described challenges around misunderstandings about research, perceived pressure for recruitment and challenges in explaining the study. During consultation, leaders expressed support for the study and screening for sickle cell disease. In community meetings, there was a common interpretation of research as medical care. Concerns centred on unfamiliar procedures. After explanations of study procedures to leaders and community members, few questions were asked about export of samples or the archiving of samples for future research.ConclusionsCommunity engagement enabled researchers to take account of staff and community opinions and issues during the study and adapt messages and methods to address emerging ethical challenges. Field workers conducting informed consent faced complex issues and their understanding, attitudes and communication skills were key influences on ethical practice. Community consultation was a challenging concept to put into practice, illustrating the complexity of assessing information needs and levels of deliberation that are appropriate to a given study. (shrink)
The importance of communities in strengthening the ethics of international collaborative research is increasingly highlighted, but there has been much debate about the meaning of the term ‘community’ and its specific normative contribution. We argue that ‘community’ is a contingent concept that plays an important normative role in research through the existence of morally significant interplay between notions of community and individuality. We draw on experience of community engagement in rural Kenya to illustrate two aspects of this interplay: (i) that (...) taking individual informed consent seriously involves understanding and addressing the influence of communities in which individuals’ lives are embedded; (ii) that individual participation can generate risks and benefits for communities as part of the wider implications of research. We further argue that the contingent nature of a community means that defining boundaries is generally a normative process itself, with ethical implications. Community engagement supports the enactment of normative roles; building mutual understanding and trust between researchers and community members have been important goals in Kilifi, requiring a broad range of approaches. Ethical dilemmas are continuously generated as part of these engagement activities, including the risks of perverse outcomes related to existing social relations in communities and conditions of ‘half knowing’ intrinsic to processes of developing new understandings. (shrink)
В монографии рассматривается соотношение индивидуальных и универсальных начал в праве как эффективное средство решения многих правовых проблем, как руководство в законодательной и судебной деятельности.
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)
Benefit sharing in health research has been the focus of international debates for many years, particularly in developing countries. Whilst increasing attention is being given to frameworks that can guide researchers to determine levels of benefits to participants, there is little empirical research from developing countries on the practical application of these frameworks, including in situations of extreme poverty and vulnerability. In addition, the voices of those who often negotiate and face issues related to benefits in practice - frontline researchers (...) and fieldworkers - are rarely included in these debates. Against this background, this paper reports on experiences of negotiating research participation and benefits as described by fieldworkers, research participants and researchers in two community based studies. (shrink)
The aim of this study was to explore the existence of moral distress among nurses in Lilongwe District of Malawi. Qualitative research was conducted in selected health institutions of Lilongwe District in Malawi to assess knowledge and causes of moral distress among nurses and coping mechanisms and sources of support that are used by morally distressed nurses. Data were collected from a purposive sample of 20 nurses through in-depth interviews using a semi-structured interview guide. Thematic analysis of qualitative data was (...) used. The results show that nurses, irrespective of age, work experience and tribe, experienced moral distress related to patient/nursing care. The major distressing factors were inadequate resources and lack of respect from patients, guardians, peers and bosses. Nurses desire teamwork and ethics committees in their health institutions as a means of controlling and preventing moral distress. There is a need for creation of awareness for nurses to recognize and manage moral distress, thus optimizing their ability to provide quality and uncompromised nursing care. (shrink)
В монографии проводится системный анализ социальной философия одного из самых значительных отечественных социальных мыслителей Б. Н. Чичерина. Для читателей, интересующихся историей отечественной социально-философской мысли.
Though Joseph Nadler published the definitive, critical edition of Hamanns' complete works, the hermetic character of these texts warrants only too strongly a publication of at least the major texts with commentaries. The annotated edition is planned to comprise eight volumes. From the viewpoint of the history of ideas, Vol. IV is undoubtedly the most interesting, since it contains the important texts on the origin of language. These were directly provoked by Herder's famous Abhandlung über den Ursprung der Sprache; "the (...) Magician of the North" fights the spirit of the Aufklärung even when it is clothed in the more attractive, pre-romantic setting of Herder's prose. Besides a fantastic amount of notes and commentary, Miss Büchsel, the editor of Vol. IV, offers a comprehensive and penetrating introductory study. Especially important are the chapters on the "pre-history" of Hamanns' Herder-interpretation and its influence on the later development of German intellectual life from the early Goethe to the old Schelling Vol. V contains the so-called mystery-writings directly pertinent to the Christian doctrine of the revelation of the Incarnated Son of God. These texts are truly esoteric, and even the multitude of notes accompanying them cannot always fully overcome their terrible obscurity. And here arises the only objection against this edition. The notes and commentaries are a mine of detailed information, and they "unconceal" the meaning of every word. Yet perhaps their very abundance impedes their stated purpose. They do help in understanding the words, but they make sustained reading of the texts themselves impossible. The encyclopedical character of the notes is cause for both exasperation and for growth in knowledge and inspiration.—M. J. V. (shrink)
This is a monumental work. The author's aim is to follow the destiny of the self-explicitation [[sic]] of western thought from the concept of substance to that of structure. Authentic philosophical thinking has always been ontological, and structure, no less than substance is a form or species of being. System too is a species of being which leads from substance to structure. Structure is only an articulation and intensification of substance. The concept of structure is the central notion of contemporary (...) thought; it is at the focus of the natural as well as of the social sciences and it alone can bridge the gap between the "two cultures." It alone can pave the way for a new philosophical humanism which, without abandoning the claim to universality and "objectivity," retains the thinking man as its focus. The author's contention is that the concept of structure is far from being a newcomer on the scene but it has been rather ripening slowly throughout the great systems of the last six centuries. Without being in any way a treatise on the history of philosophy and on the history of science, the present book describes with great competence and persuasiveness the evolution of "structure" from Nicholas of Autrecourt via Cusanus and early modern science to Descartes. Next comes an extraordinarily rich and insightful analysis of the world of Pascal. Finally the conclusion is reached through a discussion of Leibniz and Kant. This is a difficult book, a long and complex one. It might well belong to those writings which reshape our understanding of the past, and through it, contribute to our expectations of the future.--M. J. V. (shrink)