Book Review – Challenging the protection-inclusion dilemma in research ethics: A community engagement toolkit for leaving no one behind in research

Dr Michelle Singh is a Project Officer for the EDCTP, Cape Town.

May 2024

In their latest Springer book publication, Vulnerability Revisited, Schroeder et al (2024) challenge the protection-inclusion dilemma for vulnerable groups in research. Using a creative community engagement toolkit, their main mission is leaving no one behind in research.

Leave no one behind is the central, transformative promise of the UN’s 2030 Agenda for Sustainable Development and its Sustainable Development Goals. It represents the unequivocal commitment of all UN Member States to eradicate poverty, end discrimination and exclusion, and reduce the inequalities and vulnerabilities that leave people behind and undermine the potential of individuals and of humanity as a whole. Persistent forms of discrimination which leave individuals, families and whole communities marginalised and excluded are a major cause of people being left behind.

The book was written in close collaboration with two groups who have been traditionally labelled as highly vulnerable and therefore often excluded from research: the South African San (indigenous) community and the Nairobi sex worker community. Both reside in conditions characterised by severe poverty and extreme stigma. The San community face unfairness and exclusion as a highly marginalised group in South Africa. They are stigmatised due to their languages and poverty-related challenges. In Kenya, sex work is both taboo and illegal. Due to their occupation, the Nairobi sex workers face stigmatisation, discrimination, abuse and marginalisation.

Challenging the protection-inclusion dilemma

The protection-inclusion dilemma occurs during the research implementation stage, which is often considered risky and burdensome. While research implementation can carry some risks for researchers, it is the research participants who endure the most risks and burdens in research. By participating in research, participants enable the process of science and wider community benefits such as development of new products, services and processes. The fact that some participants in research carry risks and burdens for the benefit of others is a dilemma that is particularly pressing when research participants are from a vulnerable group. The Declaration of Helsinki and other ethics codes have therefore imposed significant restrictions on such research. In an endeavour to protect vulnerable groups from potential harm and exploitation, these groups are excluded from most medical research.

In Vulnerability Revisited, Schroeder et al (2024) employ the two constituent parts of the UN’s “leaving no one behind” mission to resolve the protection-inclusion dilemma:

  • Putting the most disadvantaged first.
  • Including the voices of the most disadvantaged.

Equitable research with local communities and research participants brings the concept of leaving no one behind in research into the realm of research ethics. According to Tuhiwai Smith, the most important question is “who will benefit from the research?”

The approach to resolve the protection-inclusion dilemma for at least some types of research and  vulnerable groups focused on research methods that create minimal risks and minimal burdens for those involved.

Putting the most disadvantaged first

Opportunities for minimally risky and minimally burdensome research involving vulnerable populations could be increased by deprioritising traditional methodological scenarios, the authors argue.

Nairobi sex workers are traditionally highly reluctant to participate in research that collects personal data due to a fear that research involvement might reveal to their communities that their income was earned through sex work. This is a very real, legitimate fear given that sex work is illegal in Kenya and the consequence of revealing this occupation is both dire and even potentially deadly. By undertaking research without personal data, one can prioritise the needs of the research participant over the needs of the researcher.

Likewise, the San community (first peoples of South Africa) are often reluctant to participate in research due to historical experiences of exploitation of their community. Therefore, tailoring research methods to the needs and wishes of the San community also responds to the mistrust generated by prior encounters with researchers for whom the extraction of knowledge, samples or data is paramount.

Schroeder et al (2024) applied two approaches: no collection of personal data and all research engagement was conducted through community researchers. These two measures, the authors hope, would increase the possibility of conducting research with vulnerable groups in a minimally-risky and minimally-burdensome way. This would then counteract the exclusion approach to protecting vulnerable groups.

Are the voices of the most disadvantaged heard?

Listening to the most disadvantaged aligns with best practice whenever a service is developed for this group. However, while listening to community stories can contribute to the empowerment of marginalised communities, the challenge of mistrust has also emerged. This stems from longstanding exploitation by researchers and non-researchers, such as, for instance, ethics dumping and culturally-inappropriate practices.

In the case of the vulnerable communities represented in this book, the authors found a way to listen without intruding into the private spheres of those contributing to research. For example, in the case of research with sex workers, safe workshop spaces were created in collaboration with the sex workers.

Diagram from the open access book

The book shows that engaged research, which strengthens research teams through community researchers, provides better access to hard-to-reach community members, enables the collection of authentic data and improves trustworthiness of research findings. However, most importantly, the book shows that engaged research enables equitable research partnerships. Community researchers can acquire new skills, increase self-confidence and gain a sense of accomplishment. Exclusion from research to accommodate multiple vulnerabilities is not the solution. Research that is led by vulnerable groups for vulnerable groups is the better and fairer option.

The diagram below depicts the value-based community engagement toolkit developed by the authors for leaving no one behind in research.

Two major recommendations include prioritisation of research participant needs over the needs of the researchers and building long-term relationships of trust. Application of such approaches has potential to reduce the risk to vulnerable groups, increase trust in researchers and enhance the entire research ecosystem.

The authors of this book include representatives from both the San and sex worker communities, who brought traditional oral wisdom and immense enthusiasm to this project. The use of a creative toolkit for community engagement has demonstrated that minimally risky and minimally burdensome research tailored towards the needs of highly marginalised and vulnerable communities can be scientifically impactful, inclusive and equitable.

The research for this book was funded by Wellcome. Click here to download this open access publication: Vulnerability Revisited: Leaving No One Behind in Research | SpringerLink