Parental views on tissue banking in pediatric oncology patients

Britney McMurter, Louise Parker, Robert B. Fraser, J. Fergall Magee, Christa Kozancyzn, Conrad V. Fernandez

Research output: Contribution to journalArticlepeer-review

14 Citations (Scopus)

Abstract

Purpose: Research using banked tissue is key to advancing risk-stratification and treatment of children with cancer. Knowledge of parental attitudes to ethical issues arising in tissue banking is very limited but essential in obtaining respectful consent. Methods: One hundred parents of consecutively diagnosed children with cancer were offered a validated 34-item questionnaire. Results: Respondents (n=54) included 10 of 16 parents of deceased children. The majority (89%; n=48) would agree to have tissue sent anywhere in the world but prefer pediatric aims (69%). Most (98%; n=53) would permit genetic research, if it might improve the child's health, and 76% (n=41) would permit it, even if no impact was anticipated. A minority (41%) would not allow painful, strictly research procedures, while 15% would regardless of the child's dissent. Just over half (54%; n=29) wish to renew consent if stored tissue is used for another purpose. Most (98%) believe their child should confirm consent by the age of majority, but only 71% believe the mature child should be able to withdraw consent. A minority (n=40; 74%) claim few or no rights to research profits; 83% believe these should be used to fund childhood cancer research. Conclusions: Parents are very supportive of tissue research, including genetic research. A majority of parents would prefer restricting research to pediatric conditions, and to be informed of results, even if of uncertain significance. These findings may assist Institutional Review Boards in assessing parentally perceived risks of research, and researchers in providing consent elements that support parents and adolescents in making fully informed choices.

Original languageEnglish
Pages (from-to)1217-1221
Number of pages5
JournalPediatric Blood and Cancer
Volume57
Issue number7
DOIs
Publication statusPublished - Dec 15 2011

ASJC Scopus Subject Areas

  • Pediatrics, Perinatology, and Child Health
  • Hematology
  • Oncology

Fingerprint

Dive into the research topics of 'Parental views on tissue banking in pediatric oncology patients'. Together they form a unique fingerprint.

Cite this