Incorporating biobanking into the future of healthcare: exploring patient and healthcare worker perspectives at a Canadian tertiary academic hospital.

Abstract

Biobanks are an essential resource for researchers conducting scientific and translational research but require significant support from institutions and healthcare workers (HW) to operate and are reliant on patient consent and participation. In order to better understand the barriers to institution-wide biobanking, we conducted a survey to examine the knowledge, attitudes and concerns of patients and HW on a range of biobanking-related topics, including consenting practices, privacy and trust in the healthcare team and researchers, and current practices at Sunnybrook Health Sciences Centre. Overall, we found that there is strong patient and HW support for biobanking as a resource for research (89-96%). Furthermore, the majority 53% of HW are willing to incorporate biobanking into their clinical workflow and 39% had a neutral response. Encouragingly, patients possess a high level of trust in their healthcare team (80-99%). The main concerns regarding sample donation were 'breaches of privacy' and 'genetic information being used in an exclusionary (discriminatory) fashion.' Concerns around specimen utilization emerged as a major theme from HW. These results will inform and enhance future biobanking practices to improve the patient experience and increase patient engagement while streamlining specimen collection and utilization for scientific research.