Children’s voices in research and healthcare: Participation, assent, autonomy
- Date
- 28 October 2026, 15:00–16:00
- Location
- Online event via Zoom. Registration required, use link below.
- Type
- Seminar
- Lecturer
- Kajsa Norberg Wieslander, Pernilla Pergert
- Web page
- https://uu-se.zoom.us/meeting/register/i_qUxypOQSaqu2nZB9__oQ
- Organiser
- Centre for Research Ethics & Bioethics
- Contact person
- Anna Holm Bodin
- Language
- English
Children are central to both the research that improves their health and future, and to decisions made about their own care. But involving them in either raises complex questions about participation, decision-making, and the balance between protection and autonomy.
On 28 October, Kajsa Norberg Wieslander and Pernilla Pergert bring together perspectives from research ethics and paediatric healthcare to explore how concepts like assent, agency, and participation play out across both domains.
Together, they will discuss how children's voices can be meaningfully included in research and in decisions about their own healthcare – like participating in research or deciding whether to donate stem cells to a sibling. Kajsa Norberg Wieslander and Pernilla Pergert will also explore the relationship between children, parents, and healthcare professionals, and the ethical tensions between protecting children and enabling their meaningful involvement.
Seriously ill children in research
Today, there are ambitions to expand both Swedish and European research involving sick children. The research community has a shared responsibility to promote children's participation and autonomy, ensuring that children are respected as individuals with rights of their own rather than as means to achieve research objectives.
These policy recommendations are published as part of the publication series of the Centre for Research Ethics & Bioethics at Uppsala University, with the aim of sharing the knowledge produced at the Centre with the wider community.
Norberg Wieslander, K. (2026). Svårt sjuka barn i forskning – Om barns medgivande att delta i cancerforskning. Zenodo. https://doi.org/10.5281/zenodo.22080260
About the speakers
Kajsa Norberg Wieslander recently defended her PhD thesis on the ethical aspects of including children in childhood cancer research, developing empirically informed, ethically grounded guidance for research practice. Her work centres on recruitment and informed consent, including children's autonomy, vulnerability, and participation in decision-making. She is also launching recommendations for how to involve sick children in research, whilst respecting the complex relationship between parent, child, and healthcare, autonomy and protection, research and treatment.
Pernilla Pergert has 10+ years of clinical experience in paediatric cancer care at Astrid Lindgren Children's Hospital. Her research and clinical ethics support work spans national and international networks including the European Clinical Ethics Network, and the NOPHO working group on ethics for paediatric oncology, with particular focus on ethics case reflection rounds and clinical ethics support for healthcare professionals, patients, and parents.
Kajsa Norberg Wieslander
Researcher with a primary focus on research ethics in pediatric oncology and children’s participation in assent.
Pernilla Pergert
Teaches ethics at the nursing and specialist nursing programmes. Senior lecturer in caring science and associate professor of paediatric care science with a special focus on clinical ethics and intercultural care.
