scholarly journals Sharing human biobank samples and data in exchange for funding in South Africa in international collaborative health research – an ethicolegal analysis

2020 ◽  
Vol 13 (2) ◽  
pp. 103
Author(s):  
M Maseme ◽  
S Mahomed
2020 ◽  
pp. 104973232097655
Author(s):  
Anri Smit ◽  
Leslie Swartz ◽  
Jason Bantjes ◽  
Rizwana Roomaney ◽  
Bronwyne Coetzee

Qualitative researchers are increasingly making use of multiple media to collect data within a single study. Such approaches may have the potential to generate rich insights; however, there are also potential methodological challenges in simultaneously analyzing data from multiple media. Using three case studies from our work with women who had recurrent breast cancer in South Africa, we explore four challenges of using multiple media to collect data: (a) how to understand the repetition of themes (or lack thereof) across multiple media; (b) whether or not data collected from multiple media over a protracted period should be read as longitudinal data reflecting a dynamic process; (c) what impact using multiple media has on the participant–researcher relationship; and (d) how the medium may shape the data obtained. We propose that the value of using multiple methods lies in the opportunity they provide to understand how participants engage with the different media.


Author(s):  
Patricia Wilson ◽  
Azwihangwisi Helen Mavhandu-Mudzusi

Abstract Community and public participation and involvement is an underpinning principle of primary health care, an essential component of a social justice-orientated approach to health care and a vehicle to improving health outcomes for patients, public and communities. However, influenced by history and context, there are intrinsic issues surrounding power imbalance and other barriers to partnerships between communities, public, policy makers and researchers. It is important to acknowledge these issues, and through doing so share experiences and learn from those working within very different settings. In South Africa, community participation is seen as a route to decolonisation. It is also integral to the core functions of South African Higher Education Institutes, alongside teaching and research. In the UK, there has also been a history of participation and involvement as part of a social rights movement, but notably public involvement has become embedded in publicly funded health research as a policy imperative. In this paper, we draw on our respective programmes of work in public and community participation and involvement. These include a South African community engagement project to reduce teenage pregnancy and HIV infection working through a partnership between teachers, students and university academics, and a national evaluation in England of public involvement in applied health research. We begin by highlighting the lack of clarity and terms used interchangeably to describe participation, engagement and involvement. Frameworks for partnership working with relevance to South Africa and the UK are then analysed, suggesting key themes of relationships, working together, and evaluation and monitoring. The South African project and examples of public involvement in English primary and community care research are examined through these themes. We conclude the paper by mapping out common enablers and barriers to partnership working within these very different contexts.


The Lancet ◽  
2004 ◽  
Vol 363 (9418) ◽  
pp. 1393 ◽  
Author(s):  
Jerome A Singh

2001 ◽  
Vol 6 (4) ◽  
Author(s):  
Janet Frohlich ◽  
Annatjie Botes ◽  
Marie Muller

The idea of community participation in health and research can be found in all major international and national declarations, including South Africa. Opsomming Gemeenskapsbetrokkenheid in gesondheid en in navorsing word internasionaal en nasionaal, insluitende Suid-Afrika, in verskeie verklarings van voorneme gereflekteer. *Please note: This is a reduced version of the abstract. Please refer to PDF for full text.


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