血液癌症患者对组织库的看法。

The Perspectives of Haematological Cancer Patients on Tissue Banking.

作者信息

Turon Heidi, Waller Amy, Clinton-McHarg Tara, Boyes Allison, Fleming Jennifer, Marlton Paula, Harrison Simon J, Sanson-Fisher Rob

机构信息

School of Medicine and Public Health, Priority Research Centre for Health Behaviour, University of Newcastle, Newcastle, NSW Australia ; Hunter Medical Research Institute, Newcastle, NSW Australia.

Faculty of Medicine, School of Public Health, Centre for Values, Ethics and the Law in Medicine (VELiM), The University of Sydney, Sydney, NSW Australia.

出版信息

Oncol Ther. 2016;4(1):91-102. doi: 10.1007/s40487-016-0019-x. Epub 2016 May 3.

DOI:10.1007/s40487-016-0019-x

PMID:28261642

原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC5315074/

Abstract

BACKGROUND

A high level of support for tissue banking has been identified amongst both the general public and patients. However, much debate remains about the regulatory framework of tissue banks.

OBJECTIVE

This study explored the views of haematological cancer patients regarding tissue banking and how tissue banks should operate.

METHODS

Haematological cancer patients from three outpatient clinics in Australia completed a questionnaire examining their preferences for tissue banking as well as items about their sociodemographic characteristics, disease and treatment history.

RESULTS

The majority of participants (95%) reported being willing to allow their leftover tissue to be used for medical research. Three quarters (76%) supported the idea of their medical record being linked to their tissue sample, and 77% preferred a blanket (one-off) consent model for future research use of their tissue sample. Only 57 (27%) participants had been asked to give a tissue sample for research, 98% of whom gave permission.

CONCLUSION

The majority of haematological cancer patients are willing to donate their leftover tissue to a tissue bank and have their medical records linked to tissue samples and prefer a one-off consent process. These novel data from potential donors inform the debate about how tissue banks might operate.

FUNDING

Strategic Research Partnership Grant from the Cancer Council NSW to the Newcastle Cancer Control Collaborative (New-3C) and infrastructure funding from the Hunter Medical Research Institute (HMRI). A.W. is supported by an Australian Research Council DECRA fellowship (DE150101262). T.C.M. was supported by a Leukaemia Foundation of Queensland Post-Doctoral Fellowship. A.B. is supported by National Health and Medical Research Council (APP1073317) and Cancer Institute NSW (13/ECF/1-37) Early Career Fellowships.

摘要

背景

已确定公众和患者对组织库的支持度较高。然而，关于组织库的监管框架仍存在诸多争议。

目的

本研究探讨了血液系统癌症患者对组织库的看法以及组织库应如何运作。

方法

来自澳大利亚三家门诊诊所的血液系统癌症患者完成了一份问卷，该问卷调查了他们对组织库的偏好以及有关其社会人口学特征、疾病和治疗史的项目。

结果

大多数参与者（95%）表示愿意让其剩余组织用于医学研究。四分之三（76%）的人支持将其病历与组织样本关联的想法，77%的人更喜欢一次性同意模式用于未来对其组织样本的研究。只有57名（27%）参与者被要求提供组织样本用于研究，其中98%给予了许可。

结论

大多数血液系统癌症患者愿意将其剩余组织捐赠给组织库，将其病历与组织样本关联，并更喜欢一次性同意程序。来自潜在捐赠者的这些新数据为有关组织库如何运作的辩论提供了信息。

资金

新南威尔士州癌症理事会向纽卡斯尔癌症控制协作组织（New-3C）提供的战略研究伙伴关系资助，以及亨特医学研究所（HMRI）的基础设施资助。A.W. 得到澳大利亚研究理事会DECRA奖学金（DE150101262）的支持。T.C.M. 得到昆士兰白血病基金会博士后奖学金的支持。A.B. 得到国家卫生与医学研究理事会（APP1073317）和新南威尔士州癌症研究所（13/ECF/1 - 37）早期职业奖学金的支持。