Biobanking for research: a survey of patient population attitudes and understanding
Biobanking for research: a survey of patient population attitudes and understanding
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DOI：
10.1007/s12687-013-0146-0
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发表时间：
2013-10-01
影响因子：
1.9
通讯作者：
Feigelson, Heather Spencer
中科院分区：
文献类型：
--
作者：
Rahm, Alanna Kulchak;Wrenn, Michelle;Feigelson, Heather Spencer
基于人口的生物库是遗传研究的重要资源。重要的是要了解潜在参与者对提供样本的风险和益处的理解，以确保充分的知情同意。凯泽永久科罗拉多（KPCO）目前正在计划一个生物银行，成年成员将被要求在例行抽血时贡献额外的一管血液。在诊所候诊室的成年KPCO成员被要求阅读信息手册和知情同意书。然后，受访者完成了一项调查，以评估他们对材料的理解，是否愿意向生物库提供血液样本，以及参与的促进者和障碍。203名成员参加了调查，其中69%表示愿意为生物库捐款。几乎所有的人都知道，他们不会因为使用他们的血液而获得任何产品，也不会收到他们的样本结果（分别为91%和84%）。74%的人愿意捐赠样本，因为“为研究做出贡献很重要”，超过一半的参与者（56%）表示他们不担心为生物库做出贡献。在那些担心的人中，35%的人说信息安全是一个原因。在多变量模型中，年龄和对KPCO的信任是参与意愿的重要预测因素（p=0.03和p
Population-based biobanks are a critical resource for genetic research. It is important to know what potential participants understand about the risks and benefits of providing samples in order to ensure adequate informed consent. Kaiser Permanente Colorado (KPCO) is currently planning a biobank where adult members would be asked to contribute an additional tube of blood during a routine blood draw. Adult KPCO members in clinic waiting rooms were asked to read an informational brochure and informed consent form. Respondents then completed a survey to evaluate their understanding of the materials, willingness to provide a blood sample to a biobank, and facilitators and barriers to participation. Two hundred three members participated in the survey, of whom 69 % indicated willingness to contribute to a biobank. Nearly all understood that they would not be paid for any products resulting from the use of their blood and would not receive results from their samples (91 and 84 %, respectively). Seventy-four percent would donate a sample because, "it is important to contribute to research," and over half the participants (56 %) said they had no concerns about contributing to a biobank. Of those with concerns, 35% said information security was a reason. In multivariate models, older age and trust in KPCO were significant predictors of willingness to participate (p=0.03 and p