Article Text
Abstract
There is a growing literature documenting the complex realities of consent processes in the field, and the negotiations and ethical dilemmas involved. Much has also been written about how gender and power shape household decision-making processes. However, these bodies of literature have rarely been brought together to inform research theory and practice in low-income settings. In this paper, qualitative research (observation, focus group discussions and interviews) were used alongside large clinical community-based studies conducted on the Kenyan Coast to explore how gender and power relations within households and communities and between fieldworkers and communities shape consent processes and interactions. This exploration is embedded in relevant literature and the implications for community-based health research policy and practice are considered. Across diverse forms of households, we observed significant consultation on whether or not to participate in research. Although men are typically described as household decision-makers, in practice, decision-making processes are often far more nuanced, with many women using their agency to control, sometimes subtly, the decisions made. Where decisions are made without adequately consulting women, many find strategies to exercise their choice, in ways that safeguard important relationships within households in the longer term. We also found that the gender of field staff who typically conduct research activities in the field, including consent processes, can influence household dynamics and decision-making processes with important implications for the science and ethics of research. It is essential that frontline field staff and their supervisors are aware of the complex and gendered realities of consent processes at household level, and their implications, and that they develop appropriate context-informed approaches that support ethical practice.
- Gender
- power
- ethics negotiations
- constent process
- developing countries
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Footnotes
Contributors All the three authors (DK, SM and ST) made substantial contributions to the conception and design of the research. While DK primarily collected the data, SM and SJ supervised the research and all three reviewed and revised the tools that were being used and were involved in the analysis of the data and its interpretation. All the authors drafted the manuscript and have approved the current version and its revision for publication. They all agree to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.
Funding Financial support for carrying out and writing this paper from Wellcome Trust Strategic Award to KEMRI-Wellcome Trust Research Programme (084538); and Global Health Bioethics Network (096527).
Competing interests None declared.
Patient consent Obtained.
Ethics approval This study was approved by the Kenya National Ethics Review Committee (SCC No. 1463).
Provenance and peer review Not commissioned; externally peer reviewed.
Data sharing statement As per the terms of the ethical approval for the protocol for this research, and the consent information that was provided to participants, data that are collected in this research may be shared provided it is fully anonymised and all identifiers to participants are removed. In additional, such sharing must receive prior approval and/or permission by the Institutional Data Governance committee and /or a national ethics review board. For anyone interested in accessing the data, they can write to the Data Governance Committee of the KEMRI-Wellcome Trust Research programme who will review the application and advise, and ensure that uses are compatible with the consent obtained from participants for data collection in this study. Requests can be sent to the coordinator of the Data Governance Committee on Data_Governance_Committee@kemriwellcome.org.