title: Patient/parent perspectives on genomic tumor profiling of pediatric solid tumors: The Individualized Cancer Therapy (iCat) experience.
abstract: Genomic tumor profiling (GTP) plays an important role in the care of many adult cancer patients. Its role in pediatric oncology is still evolving, with only a subset of patients currently expected to receive clinically significant results. Little is known about perspectives of pediatric oncology patients/parents on GTP.
  
  
  
  We surveyed individuals who previously underwent GTP through the iCat (Individualized Cancer Therapy) pilot study of molecular profiling in children with relapsed, refractory, and high-risk solid tumors at four pediatric cancer centers. Following return of profiling results, a cross-sectional survey was offered to the patient, if he or she was 18 years or older at enrollment, or parent, if he or she was under 18 years of age. Forty-five surveys (85% response) were completed.
  
  
  
  Eighty-nine percent (39/44) of respondents reported hoping participation would help find cures for future patients, while 59% (26/44) hoped it would increase their/their child's chance of cure. Most had few concerns about GTP, but 12% (5/43) worried they would learn their/their child's cancer was less treatable or more aggressive than previously thought. Sixty-four percent (29/45) reported feeling their participation had helped others and 44% (20/45) felt they had helped themselves/their own child, despite only one substudy subject receiving targeted therapy matched to GTP findings. Fifty-four percent (21/39) wished to receive all available profiling data, including findings unrelated to cancer and of unclear significance.
  
  
  
  Participants in pediatric GTP research perceive benefits of GTP to themselves and others, but expectations of personal benefits of GTP may exceed actual positive impact. These issues warrant consideration during consent discussions about GTP research participation.
authors.affiliation: Department of Pediatric Oncology, Dana-Farber/Boston Children's Cancer and Blood Disorders Center, Boston, Massachusetts. jonathan_marron@dfci.harvard.edu.|Harvard Medical School, Boston, Massachusetts. jonathan_marron@dfci.harvard.edu.|Division of Population Sciences, Dana-Farber Cancer Institute, Boston, Massachusetts. jonathan_marron@dfci.harvard.edu.|Office of Ethics, Boston Children's Hospital, Boston, Massachusetts. jonathan_marron@dfci.harvard.edu.
authors.forename: Jonathan M
authors.initials: JM
authors.lastname: Marron
authors.affiliation: Department of Pediatric Oncology, Dana-Farber/Boston Children's Cancer and Blood Disorders Center, Boston, Massachusetts.|Harvard Medical School, Boston, Massachusetts.
authors.forename: Steven G
authors.initials: SG
authors.lastname: DuBois
authors.affiliation: Division of Pediatric Hematology, Oncology, and Stem Cell Transplantation, Columbia University Medical Center, New York, New York.
authors.forename: Julia
authors.initials: J
authors.lastname: Glade Bender
authors.affiliation: Department of Pediatric Oncology, Children's National Medical Center, Washington, District of Columbia.
authors.forename: AeRang
authors.initials: A
authors.lastname: Kim
authors.affiliation: Department of Pediatric Oncology, Dana-Farber/Boston Children's Cancer and Blood Disorders Center, Boston, Massachusetts.|Harvard Medical School, Boston, Massachusetts.
authors.forename: Brian D
authors.initials: BD
authors.lastname: Crompton
authors.affiliation: Department of Pediatric Oncology, Dana-Farber/Boston Children's Cancer and Blood Disorders Center, Boston, Massachusetts.
authors.forename: Stephanie C
authors.initials: SC
authors.lastname: Meyer
authors.affiliation: Department of Pediatric Oncology, Dana-Farber/Boston Children's Cancer and Blood Disorders Center, Boston, Massachusetts.|Harvard Medical School, Boston, Massachusetts.
authors.forename: Katherine A
authors.initials: KA
authors.lastname: Janeway
authors.affiliation: Department of Pediatric Oncology, Dana-Farber/Boston Children's Cancer and Blood Disorders Center, Boston, Massachusetts.|Harvard Medical School, Boston, Massachusetts.|Division of Population Sciences, Dana-Farber Cancer Institute, Boston, Massachusetts.
authors.forename: Jennifer W
authors.initials: JW
authors.lastname: Mack
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D002648:Child; D002675:Child, Preschool; D003430:Cross-Sectional Studies; D005260:Female; D023281:Genomics; D006801:Humans; D007223:Infant; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000235:genetics* / Q000628:therapy; D010290:Parents; D057285:Precision Medicine; D055815:Young Adult
keywords: cancer; genomics; molecular profiling; patient perspectives; pediatric oncology; personalized medicine