4 results
Search Results
2. "It is very difficult in this business if you want to have a good conscience": pharmaceutical governance and on-the-ground ethical labour in Ghana.
- Author
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Hampshire, Kate, Mariwah, Simon, Amoako-Sakyi, Daniel, and Hamill, Heather
- Subjects
PUBLIC health ethics ,RURAL medicine ,CONSCIENCE ,MIDDLE-income countries ,INDIVIDUAL needs ,GOVERNMENT agencies - Abstract
The governance of pharmaceutical medicines entails complex ethical decisions that should, in theory, be the responsibility of democratically accountable government agencies. However, in many Low- and Middle-Income Countries (LMICs), regulatory and health systems constraints mean that many people still lack access to safe, appropriate and affordable medication, posing significant ethical challenges for those working on the "front line". Drawing on 18 months of fieldwork in Ghana, we present three detailed case studies of individuals in this position: an urban retail pharmacist, a rural over-the-counter medicine retailer, and a local inspector. Through these case studies, we consider the significant burden of "ethical labour" borne by those operating "on the ground", who navigate complex moral, legal and business imperatives in real time and with very real consequences for those they serve. The paper ends with a reflection on the tensions between abstract, generalised ethical frameworks based on high-level principles, and a pragmatic, contingent ethics-in-practice that foregrounds immediate individual needs – a tension rooted in the gap between the theory and the reality of pharmaceutical governance that shifts the burden of ethical labour downwards and perpetuates long-term public health risks. [ABSTRACT FROM AUTHOR]
- Published
- 2022
- Full Text
- View/download PDF
3. What constitutes good ethical practice in genomic research in Africa? Perspectives of participants in a genomic research study in Uganda.
- Author
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Rutakumwa, Rwamahe, de Vries, Jantina, Parker, Michael, Tindana, Paulina, Mweemba, Oliver, and Seeley, Janet
- Subjects
PARTICIPANT observation ,PSYCHOLOGICAL feedback ,STAKEHOLDER theory ,BEST practices ,ACQUISITION of data ,THEMATIC analysis - Abstract
Previous research has consistently highlighted the importance of stakeholder engagement in identifying and developing solutions to ethical challenges in genomic research, especially in Africa where such research is relatively new. In this paper, we examine what constitutes good ethical practice in research, from the perspectives of genomic research participants in Uganda. Our study was part of a multi-site qualitative study exploring these issues in Uganda, Ghana and Zambia. We purposively sampled various stakeholders including genomic research participants, researchers, research ethics committee members, policy makers and community members. This paper presents the findings from in-depth interviews with 27 people with diabetes who had participated in a diabetes genomic study. Data were collected using semi-structured interviews. Manual thematic content analysis was conducted using a framework approach. Findings indicate three key requirements that research participants see as vital for genomic research to be more responsive to research participants' needs and contextual realities: (1) de-emphasising the role of experts and institutions in the consenting process, (2) clarity about the timing and nature of feedback both of findings relevant to the health of individuals and about the broad progress of the study, and (3) more effective support for research participants during and after the study. [ABSTRACT FROM AUTHOR]
- Published
- 2020
- Full Text
- View/download PDF
4. Informed consent in genomic research and biobanking: taking feedback of findings seriously.
- Author
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Tindana, Paulina, Depuur, Cornelius, de Vries, Jantina, Seeley, Janet, and Parker, Michael
- Subjects
PSYCHOLOGICAL feedback ,EXPECTATION (Psychology) ,HEREDITY - Abstract
Genomic research and biobanking present several ethical, social and cultural challenges, particularly when conducted in settings with limited scientific research capacity. One of these challenges is determining the model of consent that should support the sharing of human biological samples and data in the context of international collaborative research. In this paper, we report on the views of key research stakeholders in Ghana on what should count as good ethical practice when seeking consent for genomic research and biobanking in Africa. This study was part of a multi-country qualitative case study conducted in three African countries: Ghana, Uganda and Zambia under the auspices of the Human Heredity and Health in Africa initiative (H3Africa). Our study suggests that while participants are willing to give consent for their samples and associated data to be used for future research purposes, they expect to receive feedback about the progress of the research and about the kinds of research being undertaken on their samples and data. These expectations need to be anticipated and discussed during the consent process which should be seen as part of an ongoing communication process throughout the research process. [ABSTRACT FROM AUTHOR]
- Published
- 2020
- Full Text
- View/download PDF
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