Hazel Partington

Open access. This open-access book discusses vulnerability and the protection-inclusion dilemma of including those who suffer from serious poverty, severe stigma, and structural violence in research. Co-written with representatives from indigenous peoples in South Africa and sex workers in Nairobi, the authors come down firmly on the side of inclusion. In the spirit of leaving no one behind in research, the team experimented with data collection methods that prioritize research participant needs over researcher needs. This involved foregoing the collection of personal data and community researchers being involved in all stages of the research. In the process, the term ‘vulnerability’ was illuminated across significant language barriers as it was defined by indigenous peoples and sex workers themselves. The book describes a potential alternative to exclusion from research that moves away from traditional research methods. By ensuring that the research is led by vulnerable groups for vulnerable groups, it offers an approach that fosters trust and collaboration with benefits for the community researchers, the wider community as well as research academics. Those living in low-income settings, in dire situations that are summarized with the term ‘vulnerability’ know best what their problems are and which priorities they have. To exclude them from research for their own protection is a patronizing approach which insinuates that researchers and research ethics committees know best. The team from this book have shown that minimally risky and minimally burdensome research tailored towards the needs of highly marginalized and stigmatized communities can be scientifically valuable as well as inclusive and equitable. I congratulate them. Prof. Klaus Leisinger, President Global Values Alliance, Former personal advisor to Kofi Annan on corporate responsibility

This open-access book is an essential read for anyone interested in undertaking research in fragile settings, such as post-disaster regions, conflict or post-conflict zones, and high-crime informal settlements. More than a quarter of humanity live in conflict-affected regions and many more are affected by natural disasters, including the impacts of climate change. Research has a crucial role to play as the insights generated through research can improve future support efforts and help to make local systems more resilient. However, as this book highlights, researchers and research participants in fragile settings face significant, and sometimes unique, ethics challenges. Readers will not only learn about these challenges but also how to address them responsibly through application of a bespoke ethics code, the TRUST Code Supplement. Thus, the book will be of interest to researchers, research ethics committee members, funders and publishers who are committed to supporting ethically sound research in challenging environments. “What makes this book particularly valuable is not only the guidance it offers but also that it shows the rigorous process through which that guidance was developed.” Dr Mihalis Kritikos, Secretary of the European Group on Ethics in Science and New Technologies and a Senior Policy Analyst at the Ethics and Integrity Sector of the European Commission.