Some of the principal factors hindering the development and conduct of pediatric palliative care (PPC) research—which ranges from observational to interventional study designs involving children with life-threatening conditions, their parents, or their siblings—stem from ethical concerns.1 This article reviews these ethical concerns, which may be divided into 2 domains: (1) the balance of risk and benefits and (2) informed consent and autonomy. We will examine the evidence regarding the validity of these concerns and consider how foreseeable ethical challenges might be resolved through thoughtful study design. With appropriate (but not prohibitive) safeguards in place, PPC research can be conducted ethically, promoting evidence-based improvement in the care provided to these children and their families.
Rapoport A. Addressing Ethical Concerns Regarding Pediatric Palliative Care Research. Arch Pediatr Adolesc Med. 2009;163(8):688–691. doi:10.1001/archpedi.163.8.688