Patients’ decision to contribute to a biobank in the light of the patient-recruiter relationship—a qualitative study of broad consent in a hospital setting

Abstract

Findings from recent studies show that the relationship developed with the particular researcher asking for broad consent plays an important role in the participant's willingness to give consent. Interviews and focus groups were conducted in order to present a description and analysis of meetings in which broad consent took place and to examine the role of recruiters in the patients' decision-making and in building trust in the Lausanne University Hospital Institutional Biobank (BIL). Our findings suggest that patient broad consent to biobanking is strongly related to its setting. BIL recruiters' were aware of their role as ambassadors of the BIL and their responsibility towards patients. Patient interviewees were sensitive to the quality of the information delivered, the timing of the consent request and the recruiters' attitudes and behaviours, including the presence of the white coat. Participating in the BIL also seemed to reinforce the patient's self-esteem and perceived efficacy, particularly since they are themselves ill and inactive when requested to participate. Recruiters and participants report that participation may be motivated by fundamental (existential) goals. Organisational factors also affected recruiters' activity and the broad consent procedure raising several ethical issues. This qualitative study suggests that biobanking based on information-based models of decision-making might need to be re-evaluated in order to improve broad consent. Our findings have implications for the practice of broad consent and patient autonomy, as well as for the recruiters' role and training.

Patient and Public Willingness to Share Personal Health Data for Third-Party or Secondary Uses: Systematic Review

“…Specific data privacy and security concerns identified included confidentiality breaches [ 16 , 59 ] often linked to the risk of reidentification [ 16 , 60 ], or ineffective anonymity processes [ 55 , 61 ]; unauthorized, or unknown data access [ 18 , 39 , 42 , 44 - 46 , 51 , 62 , 63 ]; data misuse and abuse [ 3 , 15 , 16 , 34 , 47 , 55 , 59 , 63 , 64 ], particularly for stigmatizing, or sensitive health conditions [ 45 , 47 , 55 ]; data or identity theft and fraud [ 7 , 15 , 16 , 18 , 31 , 39 , 44 , 58 , 63 - 67 ]; and the unauthorized reuse or future use of collected data [ 15 , 16 , 18 , 42 , 59 , 60 , 65 , 68 ] that extends beyond the scope of originally intended and consented purposes [ 59 , 68 ]. The latter point indicates how data sharing practices often operate in “largely unchartered territory and, as such, new harms may emerge that we cannot yet foresee” [ 65 ], accentuating the importance of dynamic consent that enables progressive patient choice as later discussed [ 47 ].…”

“…Conversely, patients appear less willing to share personal health data with government bodies [ 18 , 59 , 102 ], private insurance companies [ 16 , 32 , 34 , 36 , 44 , 54 , 67 , 72 , 77 , 84 , 92 , 95 , 100 ] (often linked to a fear of being denied coverage [ 67 , 72 , 101 ]), pharmaceutical companies [ 14 , 16 , 18 , 40 , 67 , 68 , 77 , 84 , 92 , 96 , 103 ], and commercial or private entities [ 16 , 32 , 36 , 40 , 44 , 47 , 51 , 59 , 60 , 67 , 69 , 70 , 97 , 100 , 102 , 104 - 108 ]. However, it is often not a straightforward delineation between data user type and public willingness to share.…”

Sensing the (digital) pulse. Future steps for improving the secondary use of data for research in Switzerland

“…As an alternative, there have been attempts in Switzerland to implement the concept of general consent, whereby individuals are still asked for their permission to process their data, but for not-yet-fully-defined research projects rather than single studies. 45 , 46 A recent report by the Federal Office of Public Health on the secondary use of health data also insisted that the element of consent should remain central, but that the system for the collection of consent should be modernised. 47 Proposed solutions included the idea of an electronic consent and the possibility of allowing citizens to donate their data for secondary uses in the public interests.…”

Biobanking for Neurodegenerative Diseases: Challenge for Translational Research and Data Privacy

“…In fact, feeling part of a bigger plan helps build a mutual relationship (Gottweis and others 2011). In hospital settings, both recruiters and participants believe that the decision to contribute to a biobank may be motivated by fundamental goals, and the participation seems to reinforce the patient’s self-esteem and perceived efficacy, particularly in those patients that are ill and inactive when enrolled (Bosisio and others 2021). In our experience, patients in the early stages of progressive degenerative diseases are highly motivated to take part in a research project, to participate in scientific research or to increase their room for improvement.…”