Oncology patients overwhelmingly support tissue banking

Abstract

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 62years, 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.