Research project Decision-making for children in a state of medical indeterminacy

Scientific uncertainty in medical care often tests the boundaries of parental authority in caring for their children. Many medical treatments have not been carefully, scientifically validated for their safety and efficacy. Other treatments often have questionable benefits for children or, even if they ameliorate a specific condition, may be carried out in a degrading way. Many innovative treatments offer unrealistic hopes to parents, while others, such as gene editing, may violate children’s rights, such as rights to bodily integrity and privacy. In all of these cases, treatments are frequently offered to parents without the information needed to enable them to understand the scientific complexities and uncertainties involved.

The proposed project seeks to address the question of how pediatric care decisions are made by parents, clinicians, and in some cases children themselves, especially in a state of rapid medical advances and scientific uncertainty. Thus, the proposed research will focus on a comprehensive review Swedish law (including gaps in the law), which will then serve as a framework for comparative legal analysis in Northern Europe, as well as analysis of obligations under international law. The proposed research builds on the researchers´ previous work, commissioned by the Council of Europe, to survey the rights of children in health care in a European context. The proposed research is also essential to identify reforms needed to protect children in medical care.

The project is managed by Uppsala University. Kavot Zillén, senior lecturer at Stockholm University, participated in the project between 2018-2019.