Abstract
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.
Highlights
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
This study aimed to examine medical oncology patient preferences about tissue banking, including: a) Willingness to donate tissue to be used in research; b) Factors influencing decisions to donate tissue; and c) Preferences about the use of donated tissue, including (i) the type of patient permission required for use; (ii) linking of tissue samples to identifiable medical records; and (iii) communication of findings from research using tissue samples back to donors
Consistent with oncology patient preferences from qualitative work [6], the majority of patients in this study (84 %) indicated they were willing for their tissue to be used in an approved research project, of which 96 % indicated they would allow any leftover tissue to be used in future research projects
Summary
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. Banking of human tissue is an important tool for advancing translational research, allowing the study of genes, RNA and proteins to explore the biological mechanisms that underpin disease aetiology and biology, and the Bryant et al BMC Cancer (2015) 15:413. The willingness of patients with cancer to donate to biobanks is typically higher and less variable between studies, with rates ranging from 80 to 100 % [6, 7]. Factors reported by respondents as influencing their decision to donate included feeling that donation would help patients with cancer (42.3 %) or advance science (34.6 %). Patients with cancer have reported similar views, though this group has typically focused on altruistic motivations, as the most important factor when deciding to donate tissue [7]
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