Patients attending tertiary referral urology clinics: willingness to participate in tissue banking

Abstract

Objective: To examine attitudes of male patients attending urology clinics to the donation of prostate tissue samples for research purposes, to compare attitudes in relation to age, educational attainment, previous hospitalization and experience of cancer, and to evaluate attitudes to the duration of storage of tissue samples.

Patients and methods: A systematic sample of 259 male patients aged 20-75 years, attending the urology clinics in two busy tertiary referral urological centres, completed a self-reported questionnaire in an outpatient setting.

Results: Most (84.5%) respondents strongly agreed/agreed that they would be willing to donate prostate tissue for research purposes if undergoing invasive investigation or treatment. After adjusting for other factors, being aged >55 years and having a positive attitude to new discoveries in genetics and cancer remained independently associated with the willingness to donate. There were significantly fewer agreeing with the statement 'I would like my samples to be used for profit-making research' (39.3%) than with the statement 'I would like my samples to be used for non-profit research' (88.8%; P < 0.001). While most respondents trusted researchers to act in an ethical way, the proportions agreeing with the statement 'In regard to extra research studies I would trust medical researchers to act in an appropriate and ethical way' was significantly lower in those on a first visit rather than subsequent visit to urology outpatients and significantly higher in those with a family history of serious disease or a previous cancer.

Conclusions: This study indicates that patients want to support research and become willing partners in the battle against cancer.