Vulnerability Revisited
Description
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
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Persons
Doris Schroeder is Director of the Centre for Professional Ethics at the University of Central Lancashire UK and Professor of Moral Philosophy at the School of Law, UCLan Cyprus. She is the Lead Author of the TRUST Code and has been working with the San community in South Africa since 2003 and the sex worker community in Nairobi since 2007.
Kate Chatfield is Reader at the Centre for Professional Ethics, UCLan UK and editor of SAGE Research Ethics (2020-2024). She is an empirical ethicist and specialises in research ethics and global justice.
Roger Chennells was legal advisor to the South African San Council and San communities for 30 years. He is a founding partner of the human rights law practice Chennells Albertyn, founded in 1981. One of his specialist areas of engagement is Indigenous rights. He also holds a PhD in ethics.
Hazel Partington is Senior Research Fellow in Ethics and Health at the Centre for Professional Ethics, UCLan UK. She is a social scientist who recently moved into the field of research ethics from educational research.
Joshua Kimani is an epidemiologist and Director of the Sex Workers Outreach Programme clinics in Nairobi County (SWOP). The ten research clinics provide free HIV prevention and treatment services to over 40,000 female sex workers and men who have sex with men (MSMs), 4,700 of whom are living with HIV and are on antiretrovirals (ARVs).
Gill Thomson is Professor in Perinatal Health at UCLan UK, a social scientist with specialist expertise in a range of qualitative methodologies, in particular hermeneutic phenomenology, and qualitative/narrative based systematic reviews, as well as a keen interest in community research.
Joyce Adhiambo Odhiambo is the community Positive Health, Dignity and Prevention lead at SWOP in Nairobi. She has represented the Nairobi sex worker community on national and international platforms and conferences, winning major awards, for example the Me and My Healthcare Provider award in Mental Health in 2022.
Leana Snyders is the Director of the South African San Council and the Festival Director of the Kalahari Desert Festival. She previously worked as a chief diamond sorter and a senior data compiler for marine and mineral resources, among other activities. She has been involved in advocacy work on behalf of the South African San for almost 15 years.
Collin Louw is the Chair of the Board of the South African San Council, a !Khomani San who is also the Project Manager of the Northern Cape Indigenous Knowledge Systems Documentation Centre and Chairman of the Andries Steenkamp Benefit Sharing Trust. He has been an activist for San development and San rights for the past 30 years.
Content
Chapter 1. Leaving no-one behind in Research - The Introduction.- Chapter 2. Exclusion of Vulnerable Populations from Research?.- Chapter 3. Exclusion from Research - the complex dynamics around two vulnerable communities' experiences of participation, inclusion, and exclusion in research.- Chapter 4. Vulnerability lost in translation?.- Chapter 5. Research without obtaining personal data for research purposes.- Chapter 6. Strengthening research teams through community researchers.- Chapter 7. Leaving no-one behind in Research - Recommendations for the Way Forward.- Book Backmatter.