Exploitation of the vulnerable in research: Responses to lessons learnt in history

Dhai, Ames

doi:10.7196/samj.2017.v107i6.12437

Cited by 4 publications

(3 citation statements)

References 7 publications

(10 reference statements)

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“…In other countries, these committees may be called Human Research Ethics Committees (HREC) or have other titles. Several articles discuss the evolution of HRECs in sub Saharan Africa [ 9 , 10 ].…”

Section: Bioethical Principlesmentioning

confidence: 99%

Principles of research ethics: A research primer for low- and middle-income countries

Bitter

Ngabirano

Simon

et al. 2020

African Journal of Emergency Medicine

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Ethical oversight in the form of review boards and research ethics committees provide protection for research subjects as well as guidance for safe conduct of studies. As the number of collaborative emergency care research studies carried out in low- and middle-income countries increases, it is crucial to have a shared understanding of how ethics should inform choice of study topic, study design, methods of obtaining consent, data management, and access to treatment after closure of the study. This paper describes the basic principles of Western research ethics – respect for persons, beneficence, and justice - and how the principles may be contextualized in different settings, by researchers of various backgrounds with different funding streams. Examples of lapses in ethical practice of research are used to highlight best practices.

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Section: Bioethical Principlesmentioning

confidence: 99%

Principles of research ethics: A research primer for low- and middle-income countries

Bitter

Ngabirano

Simon

et al. 2020

African Journal of Emergency Medicine

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show abstract

“…These efforts have been detailed in the previous issue of the series. [2,3] This article describes the SA Medical Research Council's (SAMRC's) journey in guidelines development for participant protections, the protections in the Bill of Rights of the SA Constitution [4] and the NHA, [1] and concludes SA's journey in protecting the human dignity of participants enrolled in research.…”

Section: In Practicementioning

confidence: 99%

“…It was established as a response to the disasters and disgrace in medical research generated by the Nazi doctors as highlighted in the previous article in this series. [3] SA started establishing protections for participants of research from the late sixties. In SA, the protectionist approach was not as a response to scandals and tragedies inflicted on vulnerable participants by SA researchers, as it had been internationally, but because of a sense of moral agency, moral responsibility and moral accountability of researchers in this country towards the people they enrolled in research.…”

Section: Conclusion [5]mentioning

confidence: 99%

The evolution of research participant protections in South Africa

Dhai

2017

S Afr Med J

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What's trust got to do with research: why not accountability?

Foláyan,

Haire

2023

Front. Res. Metr. Anal.

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This paper explores the intricate dynamics of trust, power, and vulnerability in the relationship between researchers and study participants/communities in the field of bioethics. The power and knowledge imbalances between researchers and participants create a structural vulnerability for the latter. While trust-building is important between researchers and study participants/communities, the consenting process can be challenging, often burdening participants with power abrogation. Trust can be breached. The paper highlights the contractual nature of the research relationship and argues that trust alone cannot prevent exploitation as power imbalances and vulnerabilities persist. To protect participants, bioethics guidance documents promote accountability and ethical compliance. These documents uphold fairness in the researcher-participant relationship and safeguard the interests of socially vulnerable participants. The paper also highlights the role of shared decision-making and inclusive deliberation with diverse stakeholders and recommends that efforts should be made by researchers to clarify roles and responsibilities, while research regulatory agents should transform the research-participant relationship into a legal-based contract governed by accountability principles. While trust remains important, alternative mechanisms may be needed to ensure ethical research practices and protect the interests of participants and communities. Striking a balance between trust and accountability is crucial in this regard.

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Exploitation of the vulnerable in research: Responses to lessons learnt in history

Cited by 4 publications

References 7 publications

Principles of research ethics: A research primer for low- and middle-income countries

Principles of research ethics: A research primer for low- and middle-income countries

The evolution of research participant protections in South Africa

What's trust got to do with research: why not accountability?

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