title: Overcoming autopsy barriers in pediatric cancer research.
abstract: BACKGROUND
  More than 13,000 children annually in the United States and Canada under the age of 20 will be diagnosed with cancer at a mortality approaching 20% 1,2. Tumor samples obtained by autopsy provide an innovative way to study tumor progression, potentially aiding in the discovery of new treatments and increased survival rates. The purpose of this study was to identify barriers to autopsies and develop guidelines for requesting autopsies for research purposes.
  
  
  METHODS
  Families of children treated for childhood cancer were referred by patient advocacy groups and surveyed about attitudes and experiences with research autopsies. From 60 interviews, barriers to autopsy and tumor banking were identified. An additional 14 interviews were conducted with medical and scientific experts.
  
  
  RESULTS
  Ninety-three percent of parents of deceased children did or would have consented to a research autopsy if presented with the option; however, only half of these families were given the opportunity to donate autopsy tissue for research. The most significant barriers were the physicians' reluctance to ask a grieving family and lack of awareness about research opportunities.
  
  
  CONCLUSIONS
  The value of donating tumor samples to research via an autopsy should be promoted to all groups managing pediatric cancer patients. Not only does autopsy tumor banking offer a potentially important medical and scientific impact, but the opportunity to contribute this Legacy Gift of autopsy tumor tissue also creates a positive outlet for the grieving family. Taking these findings into account, our multidisciplinary team has developed a curriculum addressing key barriers.
authors.affiliation: Pediatric Cancer Biology Program, Papé Family Pediatric Research Institute, Oregon Health & Science University, Portland, OR 97239-3098, USA.
authors.forename: Jennifer L
authors.initials: JL
authors.lastname: Alabran
authors.forename: Jody E
authors.initials: JE
authors.lastname: Hooper
authors.forename: Melissa
authors.initials: M
authors.lastname: Hill
authors.forename: Sandra E
authors.initials: SE
authors.lastname: Smith
authors.forename: Kimberlee K
authors.initials: KK
authors.lastname: Spady
authors.forename: Lara E
authors.initials: LE
authors.lastname: Davis
authors.forename: Lauren S
authors.initials: LS
authors.lastname: Peterson
authors.forename: Suman
authors.initials: S
authors.lastname: Malempati
authors.forename: Christopher W
authors.initials: CW
authors.lastname: Ryan
authors.forename: Rae
authors.initials: R
authors.lastname: Acosta
authors.forename: Sheri L
authors.initials: SL
authors.lastname: Spunt
authors.forename: Charles
authors.initials: C
authors.lastname: Keller
mesh_terms: D000293:Adolescent; D000328:Adult; D001290:Attitude; D001344:Autopsy / Q000706:statistics & numerical data*; D035843:Biomedical Research; D002648:Child; D002675:Child, Preschool; D005190:Family; D005260:Female; D006117:Grief; D017408:Guidelines as Topic; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D007407:Interviews as Topic; D008297:Male; D009369:Neoplasms; D010344:Patient Advocacy; D010372:Pediatrics / Q000379:methods*; D055815:Young Adult