肿瘤患者绝大多数都支持组织库建设。
Oncology patients overwhelmingly support tissue banking.
作者信息
Bryant Jamie, Sanson-Fisher Rob, Fradgley Elizabeth, Regan Timothy, Hobden Breanne, Ackland Stephen P
机构信息
Health Behaviour Research Group, Priority Research Centre for Health Behaviour, University of Newcastle & Hunter Medical Research Institute, HMRI Building, University of Newcastle, Callaghan, New South Wales, Australia.
Hunter Cancer Research Alliance, Hunter Cancer Biobank, Hunter Medical Research Institute, University of Newcastle and Calvary Mater Newcastle Hospital, Waratah, NSW, 2298, Australia.
出版信息
BMC Cancer. 2015 May 17;15:413. doi: 10.1186/s12885-015-1416-5.
BACKGROUND
Translational biomedical research relies on the availability of human tissue to explore disease aetiology and prognostic factors, with the objective of developing better targeted treatments. The establishment of biobanks poses ongoing ethical considerations in relation to donors. This is a quantitative study exploring medical oncology patients' preferences for contributing to tissue biobanks.
METHODS
The objectives of this study were to explore oncology patients' preferences about tissue banking, including: 1) willingness to donate; 2) factors influencing donation decisions; 3) preferences about the use of donated tissue including permission systems, data linkage, and communication about research findings to donors. A cross-sectional survey was conducted in two tertiary oncology outpatient clinics. Eligible patients were approached by volunteers to complete a touchscreen survey in waiting rooms or while receiving intravenous therapy. Consenting participants completed demographic questions and received up to 12 previously validated items exploring preferences for donating tissue.
RESULTS
224 oncology outpatients participated over a ten month period (69.1 % consent rate; 64.4 % completion rate). Most participants were female (54 %), were a mean age of 62 years, and diagnosed with breast (26 %) and bowel (20 %) cancer. Most participants indicated willingness to donate tissue (84 %) and for their sample to be stored for future use (96 %). Participants preferred a blanket consent approach (71 %), samples to be linked to medical records (62 %) and for general results of the research (79 %) to be provided to them. Factors influencing willingness to donate tissue included personal (85 %) or familial health benefits (88 %) and a sense of duty to future patients (82 %).
CONCLUSIONS
The overwhelming majority of oncology patients are willing to participate in a tissue bank, providing some support to explore 'opt-out' models of consent. To enhance patient acceptability, tissue banking programs should: (i) consider allowing blanket informed consent as well as opt-in models of consent; (ii) develop protocols allowing feedback of information about samples in line with patient preferences; (iii) provide clear information to potential donors about the benefits arising from donation.
背景
转化性生物医学研究依赖人体组织的可用性来探索疾病病因和预后因素，目的是开发更具针对性的治疗方法。生物样本库的建立引发了与捐赠者相关的持续伦理考量。这是一项定量研究，探讨肿瘤内科患者对向组织生物样本库捐赠的偏好。
方法
本研究的目的是探索肿瘤患者对组织样本库的偏好，包括：1）捐赠意愿；2）影响捐赠决定的因素；3）对捐赠组织使用的偏好，包括许可系统、数据关联以及向捐赠者通报研究结果。在两家三级肿瘤门诊进行了横断面调查。符合条件的患者由志愿者在候诊室或接受静脉治疗时邀请其完成触摸屏调查。同意参与的参与者填写了人口统计学问题，并回答了多达12项先前经过验证的关于捐赠组织偏好的问题。
结果
在十个月期间，224名肿瘤门诊患者参与了调查（同意率69.1%；完成率64.4%）。大多数参与者为女性（54%），平均年龄62岁，诊断为乳腺癌（26%）和肠癌（20%）。大多数参与者表示愿意捐赠组织（84%）并愿意将其样本储存以供未来使用（96%）。参与者更喜欢全面同意的方式（71%），样本与病历关联（62%），以及向他们提供研究的总体结果（79%）。影响捐赠组织意愿的因素包括个人（85%）或家族健康益处（88%）以及对未来患者的责任感（82%）。
结论
绝大多数肿瘤患者愿意参与组织样本库，这为探索“退出式”同意模式提供了一定支持。为提高患者接受度,组织样本库项目应：(i)考虑允许全面知情同意以及选择加入的同意模式；(ii)制定方案，根据患者偏好反馈样本信息；(iii)向潜在捐赠者清楚说明捐赠带来的益处。
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