The quality of health care for children depends much on the availability of relevant results from medical research with children as subjects. Yet, because of their vulnerability and assumed incompetence to take part in decision-making, children have often been excluded from taking part in medical research, so as to prevent them from harm. Empirical data on children’s competence to consent to such research used to be rare, but recent developments in this field have created more insights in the myths and realities concerning minor patients’ capacities to decide on medical research participation. Against the background of relevant international, European and domestic legal frameworks concerning the rights of children as participants in medical research, this article goes into instruments such as MacCAT-CR, a semi-structured interview format useable as a competence assessment tool for clinical research involving children. On the basis of this, several recommendations are defined to enhance such research, as these may do sufficient justice to the health interests and the capacities of children, while at the same time supporting researchers and child research participants when facing decisions about pediatric research options.
While coordinating the University of Groningen’s Honours College Winterschool/Atelier entitled
Children's Rights in Health Care, the need to publish the contributions to this program was generally expressed and confirmed by its participants. The Winterschool/Atelier, successfully organized in recent years, has dealt with many issues concerning the legal position of minor persons – born and unborn – in the context of health care, especially pediatric care. These issues involve matters concerning pediatric treatment, preventive care and predictive medicine, medical research involving children, incompetence and child autonomy, a child’s psychological development, parental responsibility and representation, protective judicial measures, child migration issues, children’s health rights enforcement as well as children’s health interest monitoring and promotion. During the program, leading experts in the fields of law, ethics, medicine, biology, psychology and institutions such as the Dutch Child & Hospital Foundation, the Child Protection Board, Save the Children, and UNICEF shared their views on normative standards, practical experiences, significant developments, challenging ideas, silent dreams and inevitable realities. As a result, the
Children's Rights in Health Care program provided opportunities for a profound dialogue between Honours College students and lecturing scholars on a wide range of topics involving children’s health care interests. This volume contains several analyses of health rights issues related to children. The various chapters provide an overview of this captivating area and may be of special interest to lawyers, health care professionals, ethicists, psychologists, judicial institutions, policy makers, interest groups, students and all others who are concerned with the children’s rights perspective on health care.