Profile: The Kilifi Health and Demographic Surveillance System (KHDSS).

The Kilifi Health and Demographic Surveillance System (KHDSS), located on the Indian Ocean coast of Kenya, was established in 2000 as a record of births, pregnancies, migration events and deaths and is maintained by 4-monthly household visits. The study area was selected to capture the majority of patients admitted to Kilifi District Hospital. The KHDSS has 260 000 residents and the hospital admits 4400 paediatric patients and 3400 adult patients per year. At the hospital, morbidity events are linked in real time by a computer search of the population register. Linked surveillance was extended to KHDSS vaccine clinics in 2008. KHDSS data have been used to define the incidence of hospital presentation with childhood infectious diseases (e.g. rotavirus diarrhoea, pneumococcal disease), to test the association between genetic risk factors (e.g. thalassaemia and sickle cell disease) and infectious diseases, to define the community prevalence of chronic diseases (e.g. epilepsy), to evaluate access to health care and to calculate the operational effectiveness of major public health interventions (e.g. conjugate Haemophilus influenzae type b vaccine). Rapport with residents is maintained through an active programme of community engagement. A system of collaborative engagement exists for sharing data on survival, morbidity, socio-economic status and vaccine coverage

Working with Concepts: The Role of Community in International Collaborative Biomedical Research

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

Five rules of thumb for post-ELSI interdisciplinary collaborations

In this paper we identify five rules of thumb for interdisciplinary collaboration across the natural and social sciences. We link these to efforts to move away from the ‘ethical, legal and social issues’ framework of interdisciplinarity and towards a post-ELSI collaborative space. It is in trying to open up such a space that we identify the need for: collaborative experimentation, taking risks, collaborative reflexivity, opening-up discussions of unshared goals and neighbourliness

Laboratory evidence of disseminated intravascular coagulation is associated with a fatal outcome in children with cerebral malaria despite an absence of clinically evident thrombosis or bleeding

Background A procoagulant state is implicated in cerebral malaria (CM ) pathogenesis, but whether disseminated intravascular coagulation (DIC ) is present or associated with a fatal outcome is unclear. Objectives To determine the frequency of overt DIC , according to ISTH criteria, in children with fatal and non‐fatal CM . Methods/patients Malawian children were recruited into a prospective cohort study in the following diagnostic groups: retinopathy‐positive CM (n = 140), retinopathy‐negative CM (n = 36), non‐malarial coma (n = 14), uncomplicated malaria (UM ), (n = 91), mild non‐malarial febrile illness (n = 85), and healthy controls (n = 36). Assays in the ISTH DIC criteria were performed, and three fibrin‐related markers, i.e. protein C, antithrombin, and soluble thrombomodulin, were measured. Results and conclusions Data enabling assignment of the presence or absence of ‘overt DIC ’ were available for 98 of 140 children with retinopathy‐positive CM . Overt DIC was present in 19 (19%), and was associated with a fatal outcome (odds ratio [OR] 3.068; 95% confidence interval [CI] 1.085–8.609; P = 0.035]. The levels of the three fibrin‐related markers and soluble thrombomodulin were higher in CM patients than in UM patients (all P < 0.001). The mean fibrin degradation product level was higher in fatal CM patients (71.3 μg mL−1 [95% CI 49.0–93.6]) than in non‐fatal CM patients (48.0 μg mL−1 [95% CI 37.7–58.2]; P = 0.032), but, in multivariate logistic regression, thrombomodulin was the only coagulation‐related marker that was independently associated with a fatal outcome (OR 1.084 for each ng mL−1 increase [95% CI 1.017–1.156]; P = 0.014). Despite these laboratory derangements, no child in the study had clinically evident bleeding or thrombosis. An overt DIC score and high thrombomodulin levels are associated with a fatal outcome in CM , but infrequently indicate a consumptive coagulopathy

Experiences with community engagement and informed consent in a genetic cohort study of severe childhood diseases in Kenya

<p>Abstract</p> <p>Background</p> <p>The 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.</p> <p>Methods</p> <p>The 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.</p> <p>Results</p> <p>Field 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.</p> <p>Conclusions</p> <p>Community 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.</p

Taking roles in interdisciplinary collaborations: Reflections on working in post-ELSI spaces in the UK synthetic biology community

Based on criticism of the “ethical, legal and social implications” (ELSI) paradigm, researchers in science and technology studies (STS) have begun to create and move into “post-ELSI” spaces. In this paper, we pool our experiences of working towards collaborative practices with colleagues in engineering and science disciplines in the f eld of synthetic biology. We identify a number of dif erent roles that we have taken, been assumed to take, or have had foisted upon us as we have sought to develop postELSI practices. We argue that the post-ELSI situation is characterised by the demands placed on STS researchers and other social scientists to f uctuate between roles as contexts shift in terms of power relations, af ective tenor, and across space and over time. This leads us to posit four orientations for post-ELSI collaborative practices that could help establish more fruitful negotiations around these roles

Inelastic lifetimes of confined two-component electron systems in semiconductor quantum wire and quantum well structures

We calculate Coulomb scattering lifetimes of electrons in two-subband quantum wires and in double-layer quantum wells by obtaining the quasiparticle self-energy within the framework of the random-phase approximation for the dynamical dielectric function. We show that, in contrast to a single-subband quantum wire, the scattering rate in a two-subband quantum wire contains contributions from both particle-hole excitations and plasmon excitations. For double-layer quantum well structures, we examine individual contributions to the scattering rate from quasiparticle as well as acoustic and optical plasmon excitations at different electron densities and layer separations. We find that the acoustic plasmon contribution in the two-component electron system does not introduce any qualitatively new correction to the low energy inelastic lifetime, and, in particular, does not produce the linear energy dependence of carrier scattering rate as observed in the normal state of high-$T_c$ superconductors.Comment: 16 pages, RevTeX, 7 figures. Also available at http://www-cmg.physics.umd.edu/~lzheng