Posted on 23 January 2020
Guest speakers Dr Amanda Mason-Jones, from the University of York, and Katharine Wright, from the Nuffield Council on Bioethics, addressed, in particular, the concepts of “resilience” and “vulnerability” and said that we need to rethink their meaning in health research, policy, and practice.
Dr Mason-Jones discussed how current policy, particularly in the United Kingdom, the United States, and Australia, places the onus on children to develop resilience and take individual responsibility for their response to adversity. Drawing from her research on vulnerable young people, she said that the focus should instead be on structural inequalities that put children at risk. Her research includes analyses of school‐based sexual and reproductive health programmes in South Africa and worldwide, as well as structural violence and marginalisation among young migrants, and on the need to address systems that influence child sexual exploitation in England. She said that negative perceptions of young people and the belief that they are in control of their vulnerability needs to be reframed. Children are more likely to thrive, she says, if failed systems that make them vulnerable are removed and if they are provided resources and support services.
Katharine Wright discussed the dilemma between protecting children from the burden and risks of clinical research and the need to involve children to create more evidence-based health care for young people. She and her colleagues at the Nuffield Council on Bioethics set up an interdisciplinary expert working group to explore how research involving children can be done ethically and effectively. They sought extensive input from children and parents in the United Kingdom and internationally. In their published report, they found that rather than being passive participants, children can actively engage with research and influence the design of studies. Children and their families can work with researchers to make sure studies are fair to children. “Vulnerability,” as Wright explains it, is situational, not inherent in a child, and a partnership of researchers, parents, and young people can address factors that make a child vulnerable in research.
The seminar was followed by a group discussion on a variety of topics including interventions that can help children manage challenging situations; the validity of online survey research involving children; the varying legal classifications of young people forced to move away from their homes; language barriers in research; how to manage public responses to research; and the artificial age ranges for the category of “children” and the implications of this for research.
A video of the seminar can be found here.
The Centre for Global Health Histories is extremely grateful to Dr Amanda Mason-Jones and Katharine Wright for leading the seminar and we remain indebted to the Wellcome Trust and Commonwealth Scholarship Committee for sponsoring this event.
Event report by Alexandra Bradbury (MA, Medical History and Humanities, University of York).