title: Consent to tissue banking for research: qualitative study and recommendations.
abstract: OBJECTIVE
  To explore how families of children with cancer experience giving consent for tissue banking and to produce recommendations on good practice.
  
  
  METHODS
  79 participants from 42 families (41 mothers, 18 fathers, 20 children and young people with cancer) took part in semistructured interviews to explore their experiences of being approached for consent to tissue banking.
  
  
  METHODS
  Tertiary care facilities for childhood cancer.
  
  
  RESULTS
  Families are generally supportive of tissue banking, although they report that it may be difficult for them to consider all the implications when asked for consent. They typically do not want detailed information when consent is sought close to diagnosis, preferring to see tissue banking as part of routine practice. Families often recognise that their consent may not be fully informed, but are content to give consent based on their understanding at the time. Some may want a chance to go over the information and revisit their decision when things have settled.
  
  
  CONCLUSIONS
  Families' views can inform practical recommendations for optimising the experience of consent for tissue banking. Current guidelines for obtaining consent should be revisited to take account of families' preferences.
authors.affiliation: Department of Infection, Immunity and Infl ammation, University of Leicester, Leicester, UK.
authors.forename: Carmen
authors.initials: C
authors.lastname: Soto
authors.forename: Carolyn
authors.initials: C
authors.lastname: Tarrant
authors.forename: Kathy
authors.initials: K
authors.lastname: Pritchard-Jones
authors.forename: Mary
authors.initials: M
authors.lastname: Dixon-Woods
mesh_terms: D001294:Attitude to Health; D035843:Biomedical Research / Q000941:ethics; D002648:Child; D003657:Decision Making; D004739:England; D004992:Ethics, Medical; D005260:Female; D006801:Humans; D007258:Informed Consent / Q000941:ethics* / Q000331:legislation & jurisprudence; D008297:Male; D009369:Neoplasms / Q000473:pathology*; D033282:Parental Consent / Q000941:ethics / Q000331:legislation & jurisprudence; D010290:Parents / Q000523:psychology; D017410:Practice Guidelines as Topic; D011368:Professional-Family Relations; D036301:Qualitative Research; D013997:Time Factors; D014015:Tissue Banks / Q000941:ethics*