title: Optimization of informed consent for umbilical cord blood banking.
abstract: OBJECTIVE
  The purpose of this project was to evaluate the informed consent process for donation to a public umbilical cord blood bank.
  
  
  METHODS
  Telephone interviews were conducted with 170 women who had given consent to donate their newborn infants' umbilical cord blood.
  
  
  RESULTS
  Of the 170 women who were contacted, 96.8% of the women reported that all their questions had been answered. Nevertheless, approximately one third of the respondents did not consider themselves to be in research, and almost one quarter of the respondents did not know how to contact the umbilical cord blood bank if they or their infant became seriously ill. Further, a substantial proportion of the respondents did not understand the full range of alternatives to donation and incorrectly endorsed potential benefits.
  
  
  CONCLUSIONS
  Informed consent could be optimized by (1) having those personnel who obtain consent emphasize that banking involves research and to explain the true benefits of donation, (2) ensuring that parents know how and when to contact the umbilical cord blood bank after donation, and (3) using phone surveys to continue assessments and to monitor changes in the process.
authors.affiliation: Division of General Internal Medicine, Department of Medicine, Duke University Medical Center, Durham, NC 27710, USA. sugar001@mc.duke.edu
authors.forename: Jeremy
authors.initials: J
authors.lastname: Sugarman
authors.forename: Joanne
authors.initials: J
authors.lastname: Kurtzberg
authors.forename: Tamara L
authors.initials: TL
authors.lastname: Box
authors.forename: Ronnie D
authors.initials: RD
authors.lastname: Horner
mesh_terms: D000328:Adult; D001771:Blood Banks; D001782:Blood Donors; D004522:Educational Status; D004992:Ethics, Medical; D005260:Female; D005312:Fetal Blood; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007182:Income; D007258:Informed Consent; D044469:Racial Groups; D012106:Research; D011795:Surveys and Questionnaires; D013689:Telephone; D013997:Time Factors