Optimization of informed consent for umbilical cord blood banking

Optimization of informed consent for umbilical cord blood banking
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DOI:
10.1067/mob.2002.127307
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发表时间:
2002-12-01
影响因子:
9.8
通讯作者:
Horner, RD
Horner, RD
中科院分区:
医学1区
文献类型:
--
作者:
Sugarman, J;Kurtzberg, J;Horner, RD

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目的:评价公共脐带血捐献知情同意程序。研究设计:对170名同意捐献新生儿脐带血的妇女进行电话访谈。结果:在170名接受调查的妇女中,96.8%的人表示她们的问题都得到了回答。然而,约三分之一的受访者认为自己不在研究中,近四分之一的受访者不知道如何联系脐带血库,如果他们或他们的婴儿患了重病。此外,相当大比例的受访者不了解捐赠的所有替代方案,并错误地认可了潜在的好处。结论:通过(1)让获得同意的人员强调银行业务涉及研究并解释捐赠的真正好处,(2)确保父母知道如何以及何时在捐赠后联系脐带血库,以及(3)使用电话调查继续评估并监测过程中的变化,可以优化知情同意。
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.