“As Long as You Ask”: A Qualitative Study of Biobanking Consent—Oncology Patients’ and Health Care Professionals’ Attitudes, Motivations, and Experiences—the B‐PPAE Study

AbstractIntroduction.Consent to biobanking remains controversial, with little empirical data to guide policy and practice. This study aimed to explore the attitudes, motivations, and concerns of both oncology patients and health care professionals (HCPs) regarding biobanking.Materials and Methods.Qualitative interviews were conducted with oncology patients and HCPs purposively selected from five Australian hospitals. Patients were invited to give biobanking consent as part of a clinical trial and/or for future research were eligible. HCPs were eligible if involved in consenting patients to biobanking or to donate specimens to clinical trials.Results.Twenty‐two patients participated, with head and neck (36%) and prostate (18%) the most common cancer diagnoses; all had consented to biobanking. Twenty‐two HCPs participated, from across eight cancer streams and five disciplines. Themes identified were (a) biobanking is a "no brainer"; (b) altruism or scientific enquiry; (c) trust in clinicians, science, and institutions; (d) no consent—just do it; (e) respecting patient choice ("opt‐out"); (f) respectful timing of the request; (g) need for emotional/family support; (h) context of the biobanking request matters; and (i) factors for biobanking success.Discussion.These findings reinforced previous findings regarding high public trust in, and support for, biobanking. An initial opt‐in consent approach with the option of later opt‐out was favored by patients to respect and recognize donor generosity, whereas HCPs preferred an upfront opt‐out model. Factors impacting biobanking success included the context of the request for use in a trial or specific research question, pre‐existing patient and HCP rapport, a local institution champion, and infrastructure.Implications for Practice.Patients and health care professionals (HCPs) who experienced cancer biobanking consent were overwhelmingly supportive of biobanking. The motivations and approaches to seeking consent were largely mirrored between the groups. The findings of this study support the opt‐in model of biobanking favored by patients; however, HCPs preferred an opt‐out model. Both groups recognize the importance of making the request for biobanking at an appropriate time, preferably with emotional or family support, and respecting the timing of the request and privacy of the patient. Biobanking success can be promoted by hospital departments with a research focus by identifying an institutional biobanking champion and ensuring local infrastructure is available.

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