Vulnerability, Agency, and the Research Encounter: Family Members' Experiences and Perceptions of Participating in an Observational Clinical Study in Kenya

2021 ◽  
pp. 155626462110053
Author(s):  
Scholastica M. Zakayo ◽  
Mary N. Kimani ◽  
Gladys Sanga ◽  
Rita Njeru ◽  
Anderson Charo ◽  
...  
Keyword(s):  
Clinical Study ◽  
Clinical Research ◽  
Qualitative Methods ◽  
Research Ethics ◽  
Family Members ◽  
Empirical Ethics ◽  
Care Seeking ◽  
Structural Vulnerability ◽  
Research Participants

Pediatric clinical research in low-resourced countries involves individuals defined as “vulnerable” in research ethics guidance. Insights from research participants can strengthen the design and oversight of studies. We share family members' perspectives and experiences of an observational clinical study conducted in one Kenyan hospital as part of an integrated empirical ethics study. Employing qualitative methods, we explored how research encounters featured in family members' care-seeking journeys. Our data reveals that children's vulnerability is intricately interwoven with that of their families, and that research processes and procedures can inadvertently add to hidden burdens for families. In research, the potential for layered and intersecting situational and structural vulnerability should be considered, and participants' agency in constrained research contexts actively recognized and protected.

Inclusion Practice in Lung Cancer Trials

2006 ◽  
Vol 13 (6) ◽  
pp. 649-660 ◽  
Author(s):  
Patricia Jaspers ◽  
Arie van der Arend ◽  
Rinus Wanders
Keyword(s):  
Lung Cancer ◽  
Qualitative Study ◽  
Clinical Research ◽  
Research Ethics ◽  
Medical Staff ◽  
Ethical Aspects ◽  
Research Participants ◽  
Institutional Ethics ◽  
Ethics Policy ◽  
Cancer Trials

This article presents the results of a qualitative study on the ethical aspects of inclusion practice for radiotherapy patients taking part in clinical research. The study focused on the standards and values of this process. Patients and physicians were interviewed about their views and experiences. Analysis of these interviews showed that candidate research participants need better protection from unwanted factors that could influence their choice about participation. Researchers need proper education about regulation, codes and directives in the field of research ethics, and they should be aware of the underlying ethical concepts of these regulations. A sound institutional ethics policy is necessary in order to guide medical staff in decisions about the inclusion of patients in trials.

scholarly journals State of clinical research ethics in Pakistan

2007 ◽  
Vol 13 (9) ◽  
pp. 1011-1011 ◽  
Author(s):  
Muhammad N Ghayur ◽  
Ayesha Ghayur ◽  
Luke J Janssen
Keyword(s):  
Clinical Research ◽  
Research Ethics

Ethics and the Ruling Relations of Research Production

2003 ◽  
Vol 8 (1) ◽  
pp. 70-80 ◽  
Author(s):  
Carole Truman
Keyword(s):  
Research Ethics ◽  
Ethics Committees ◽  
Research Process ◽  
Research Governance ◽  
Community Mental Health Service ◽  
Moral Obligations ◽  
Research Participants ◽  
Research Production ◽  
Health And Social Care ◽  
Ethical Approval

The role of research ethics committees has expanded across the UK and North America and the process of ethical review has become re-institutionalised under proposals for research governance proposed by government. Ethics committees have gained a powerful role as gatekeepers within the research process. Underpinning the re-constitution of ethical guidelines and research governance, are a range of measures which protect institutional interests, without necessarily providing an effective means to address the moral obligations and responsibilities of researchers in relation to the production of social research. Discussion of research ethics from the standpoint of research participants who in this paper, are service users within health and social care, provides a useful dimension to current debate. In this paper I draw upon experiences of gaining ethical approval for a research study which focused on user participation within a community mental health service. I discuss the strategies used to gain ethical approval and the ‘formal concerns’ raised by the ethics committee. I then describe and discuss ethical issues which emerged from a participants’ perspective during the actual research as it was carried out. These experiences are analysed using aspects of institutional ethnography which provides a framework to explore how the experiences of research participants are mediated by texts which govern the processes of research production. The paper highlights incongruities between the formal ethical regulation of research, and the experiences of research participants in relation to ethical concerns within a research process.

scholarly journals Research and Publication Ethics

2021 ◽  
Vol 7 (3) ◽  
pp. 198-207
Author(s):  
PO Olatunji
Keyword(s):  
Research Ethics ◽  
Early Research ◽  
Publication Ethics ◽  
Research Participants ◽  
Research Findings ◽  
Research Period

Research is an effort to seek the truth and communicate it. In the process, participants or subjects of research must be recognised and respected, and the principles of research ethics must protect the vulnerable from exploitation. The researcher must do the reporting of research findings with honesty and professionalism. Non-adherence to the above principles in the early research period resulted in gross abuse of personality and autonomy. Research is now subjected to rigorous scrutiny to stem the tide of abuse and ascertain and guarantee the sanctity of the research participants, process and product. These are the fundamentals of the practice of ethics in both research and publication. In effect, this paper aims to address ethics and its application to research and publications.

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