In the age of patient participation, ethics are more important than ever to help guide clinicians in situations of uncertainty. Principles of Biomedical Ethics by James F. Childress and Thomas L. Beauchamp remains the most important reference in medical ethics. In their work, they conceptualize four principles designed to help guide clinicians in decision making, notably beneficence, non-maleficence, autonomy, and justice. While using ethical principles dates back to at least Hippocrates, the introduction by Beauchamp and Childress of the principles of autonomy and justice have helped to deal with new challenges. This contribution will discuss how the principles can help elucidate issues of patient participation in epilepsy care and research using two case studies.

In this paper, we will discuss the equilibrium to be found between two principles (beneficence and autonomy) in the context of emerging debates in epilepsy care and research. The methods section details the specificities of each principle and their relevance to epilepsy care and research.

Using two case studies, we will explore the potential and limits of patient participation and how the ethical principles may help to provide nuance and reflection in this emerging debate. First of all, we will explore a clinical case which involves a conflictual situation with the patient and family about psychogenic nonepileptic seizures. We will then discuss an emerging issue in epilepsy research, namely the integration of persons with severe refractory epilepsy as patient research partners.