According to international and national agreements and conventions children have the right to express their views in all matters affecting them. This is a signal to parents, medical personnel and other responsible adults to consider the opinion of the child when making decisions that affect them. In medical treatment and research, however, the rights of children are often confronted with other interests that may impede on these basic rights, whereby the child’s right to express their interests may not be considered. The role of children in clinical trials, for example, poses many questions regarding recruitment and participation due to concerns over risk, burden and safety of children and other ethical considerations.
This conference focuses on the bioethics of children’s participation and decision-making in health care, scientific studies and clinical trials. The presentations will cover important questions such as:
Who can make decisions for children and under what circumstances?
How should children take part in /concerning their health?
How should children’s views be considered/included in the decision-making process?
Under what premises should children be allowed to participate in clinical trials?
Who can decide on their participation?
Do we need special paediatric research ethics committees?
Information about the speakers
Presentations and abstracts:
CHILDREN’S PARTICIPATION IN TREATMENT AND RESEARCH
Children’s rights and medical decisions – an overview
Ritva Halila, department director, Hjelt Institute, University of Helsinki, member of EGE
Children’s rights and risks – a Nordic perspective
Cecilia Sjölander, Child Ombudsman in Sweden
Children’s participation – parent´s perspective
Ragna Marinósdóttir, director of Umhyggja- organisation for chronically ill children in Iceland, Iceland
CHILDREN’S RIGHT TO PARTICIPATION IN DECISIONS ON MEDICAL CARE
How can children participate in decisions on therapy and clinical trials?
Kjeld Schmiegelow, general secretary of NOPHO
What counts as participation? Some cautionary remark
Linus Broström, researcher in Medical Ethics, Lund University
Who decides on initiating, continuing or discontinuing treatment in extremely ill patients?
Anders Castor, child oncologist and head physician at Child and Youth Hospital, Lund
Children’s participation in the decision-making from a legal perspective
Titti Mattsson, professor in Public Law, Lund University
CHILDREN’S PARTICIPATION IN RESEARCH AND CLINICAL TRAILS
Children and medicines – ethical concerns in testing medicines on children
Kalle Hoppu, associate professor, Helsinki University Central Hospital
Do we need paediatric ethical committees?
Göran Elinder, professor in paediatrics and paediatric,
counsellor at the Regional ethical committee at Karolinska Institutet
REGULATING CHILDREN’S RIGHTS IN TREATMENT AND RESEARCH
Regulations, guidelines and structure when you will perform scientific studies on children in Europe
Agnes Saint Raymond, European Medicines Agency, London
Challenges for European Ethical Committees (EC) in overseeing research on children- data from the TEDDY-study
Annagrazia Altavilla, lawyer and associate Senior Lecturer at EEM -Bioethics research Centre- University of Aix-Marseille, France
Ethical assessment of pediatric trials: examples of issues with risk assessment moral obligations for participation?
Inez de Beaufort , professor, Dept. Medical Ethics and Philosophy of Medicine, Rotterdam, Netherlands, member of EGE