Children with cancer in research: Clinical and ethical aspects of recruitment

Children’s research participation is crucial to improving treatment and survival for children with cancer. But informed consent processes are ethically complicated, partly due to children’s limited autonomy and the decision-making taking place within the context of the family in a time of psychological crisis. Reconciling care and research obligations can also cause conflicts regarding roles as well as moral distress among nurses and doctors.

By assessing ethical issues from different stakeholder- and ethical perspectives, we aim to further the knowledge on how to ethically engage with children and their families in the context of clinical research recruitment.  

This PhD project is funded by the Swedish Childhood Cancer Foundation (Barncancerfonden) and is estimated to run from 2020-2024.

Aims

The overarching aim of the project is to further the understanding of ethical and clinical aspects of recruiting children with cancer to research in the Swedish context. This includes:

• Exploring health care professionals' ethical concerns when recruiting children with cancer for research
• Exploring Research ethics committee members’ perspectives on paediatric research applications 
• Exploring experiences of research recruitment among children with cancer and their parents
• Developing ethically informed practical guidance for recruitment of children with cancer to research, by integrating empirical findings with normative ethical theories

Methods

Empirical methods (qualitative interviews) will be used in combination with theoretical ethical analysis.

Contact

• Kajsa Norberg Wieslander, MSc, Doctoral Student

Supervisors

• Anna T Höglund, Associate Professor, Main supervisor
• Sara Frygner-Holm, PhD, Co-supervisor
• Tove Godskesen, Associate Professor, Co-supervisor