title: Ethical issues at the interface of clinical care and research practice in pediatric oncology: a narrative review of parents' and physicians' experiences.
abstract: BACKGROUND
  Pediatric oncology has a strong research culture. Most pediatric oncologists are investigators, involved in clinical care as well as research. As a result, a remarkable proportion of children with cancer enrolls in a trial during treatment. This paper discusses the ethical consequences of the unprecedented integration of research and care in pediatric oncology from the perspective of parents and physicians.
  
  
  METHODS
  An empirical ethical approach, combining (1) a narrative review of (primarily) qualitative studies on parents' and physicians' experiences of the pediatric oncology research practice, and (2) comparison of these experiences with existing theoretical ethical concepts about (pediatric) research. The use of empirical evidence enriches these concepts by taking into account the peculiarities that ethical challenges pose in practice.
  
  
  RESULTS
  Analysis of the 22 studies reviewed revealed that the integration of research and care has consequences for the informed consent process, the promotion of the child's best interests, and the role of the physician (doctor vs. scientist). True consent to research is difficult to achieve due to the complexity of research protocols, emotional stress and parents' dependency on their child's physician. Parents' role is to promote their child's best interests, also when they are asked to consider enrolling their child in a trial. Parents are almost never in equipoise on trial participation, which leaves them with the agonizing situation of wanting to do what is best for their child, while being fearful of making the wrong decision. Furthermore, a therapeutic misconception endangers correct assessment of participation, making parents inaccurately attribute therapeutic intent to research procedures. Physicians prefer the perspective of a therapist over a researcher. Consequently they may truly believe that in the research setting they promote the child's best interests, which maintains the existence of a therapeutic misconception between them and parents.
  
  
  CONCLUSIONS
  Due to the integration of research and care, their different ethical perspectives become intertwined in the daily practice of pediatric oncology. Increasing awareness of what this means for the communication between parents and physicians is essential. Future research should focus on efforts that overcome the problems that the synchronicity of research and care evokes.
authors.affiliation: Department of Pediatrics, Leiden University Medical Center, J6-S, PO Box 9600, 2300 RC Leiden, The Netherlands. m.c.de_vries@lumc.nl
authors.forename: Martine C
authors.initials: MC
authors.lastname: de Vries
authors.forename: Mirjam
authors.initials: M
authors.lastname: Houtlosser
authors.forename: Jan M
authors.initials: JM
authors.lastname: Wit
authors.forename: Dirk P
authors.initials: DP
authors.lastname: Engberts
authors.forename: Dorine
authors.initials: D
authors.lastname: Bresters
authors.forename: Gertjan J L
authors.initials: GJ
authors.lastname: Kaspers
authors.forename: Evert
authors.initials: E
authors.lastname: van Leeuwen
mesh_terms: D026688:Bioethical Issues; D002648:Child; D002986:Clinical Trials as Topic / Q000941:ethics*; D003657:Decision Making / Q000941:ethics*; D036262:Empirical Research; D032984:Ethics, Research; D006801:Humans; D008495:Medical Oncology / Q000941:ethics*; D033262:Narration; D033282:Parental Consent / Q000941:ethics; D010290:Parents / Q000523:psychology; D005791:Patient Care / Q000941:ethics*; D010372:Pediatrics / Q000941:ethics*; D010819:Physician's Role; D010820:Physicians; D011368:Professional-Family Relations / Q000941:ethics; D036301:Qualitative Research; D012108:Research Personnel / Q000941:ethics*; D057212:Therapeutic Equipoise; D055990:Therapeutic Misconception