Optimization of informed consent for umbilical cord blood banking

OBJECTIVE: The purpose of this project was to evaluate the informed consent process for donation to a public umbilical cord blood bank. STUDY DESIGN: 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. CONCLUSION: 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.