title: Altruistic discourse in the informed consent process for childhood cancer clinical trials.
abstract: Scholars have debated the role that altruistic considerations play--and should play--in recruitment and decision-making processes for clinical trials. Little empirical data are available to support their various perspectives. We analyzed 140 audiotaped pediatric informed consent sessions, of which 95 (68%) included at least one discussion of how participation in a cancer clinical trial might benefit: 1) the pursuit of scientific knowledge generally; 2) other children with cancer specifically; and 3) "the future" and other vaguely defined recipients. Clinicians initiated most (80%) of these discussions of altruism. The enrollment rate of children in the clinical trial was high (83%) overall, but not higher among children whose parents were involved in an altruism-oriented discussion. These findings suggest that: (1) clinicians invoke a spectrum of altruistic considerations rather than a single monothematic notion of altruism, and (2) the effect of altruistic considerations on subsequent enrollment decisions is marginal. While further research on this topic is warranted, bioethical debate should strive to reflect the diversity of altruistic discourse in clinical research encounters and to place this discourse in the context of other, including nonaltruistic, considerations.
authors.affiliation: Case Western Reserve University, USA.
authors.forename: Christian
authors.initials: C
authors.lastname: Simon
authors.forename: Michelle
authors.initials: M
authors.lastname: Eder
authors.forename: Eric
authors.initials: E
authors.lastname: Kodish
authors.forename: Laura
authors.initials: L
authors.lastname: Siminoff
mesh_terms: D000208:Acute Disease; D000328:Adult; D000533:Altruism; D002648:Child; D002986:Clinical Trials as Topic / Q000941:ethics / Q000592:standards; D003657:Decision Making; D005260:Female; D006801:Humans; D007258:Informed Consent; D019359:Knowledge; D007951:Leukemia, Myeloid / Q000628:therapy; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000628:therapy; D010290:Parents; D018579:Patient Selection / Q000941:ethics; D010819:Physician's Role; D054198:Precursor Cell Lymphoblastic Leukemia-Lymphoma / Q000628:therapy; D012108:Research Personnel; D013637:Tape Recording; D014481:United States