Oncology patients overwhelmingly support tissue banking

BMC Cancer

Research Article

Jamie Bryant¹  Elizabeth Fradgley¹  Breanne Hobden¹  Rob Sanson-Fisher¹  Timothy Regan¹  Stephen P. Ackland² 

[1] 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, 2298, Waratah, NSW, Australia;

关键词: Neoplasm;    Living donors;    Tissue banks;    Informed consent;   

DOI  :  10.1186/s12885-015-1416-5

 received in 2014-09-11, accepted in 2015-05-05,  发布年份 2015

来源: Springer

【 摘 要 】

BackgroundTranslational 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.MethodsThe 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.Results224 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 %).ConclusionsThe 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.

【 授权许可】

CC BY   
© Bryant et al.; licensee BioMed Central. 2015