2026 Theses Master's

A Participant-Centered Framework for Community Engagement in Academic Medical Center Biobanks

Boshnick, Alex; Bergner, Amanda; Vena, Natalie; Pendrick, Danielle

Biobanking allows biomedical researchers to obtain biological samples and health data from participants for research. Traditionally, communication between research participants and investigators has been monodirectional, where participants are consented to a study and do not hear from the research team again. Dynamic consent is a concept that has emerged over the last decade and is focused on eliciting and maintaining patient engagement in the research process. While this concept has been explored across various research protocols, how this framework might be applied to a biobank at a large academic medical center remains unknown. In this study, patient preferences about communication between investigators and participants regarding the status of biobanked materials, data, and whether and how donated samples have been used in the research process were explored. Participants in an academic medical center-based biobank who were 18-years-old or older were invited to participate in either an in-person or virtual focus group exploring motivations for participating in a biobank with the goal of supporting research, general views on receiving communication about this research, preferred communication formats and channels, and trust in the institution sponsoring the biobank and biomedical research more broadly. Transcripts were coded and analyzed thematically. Six focus groups with 34 participants were conducted (recruitment rate 3.4%). The majority of subjects were white (70%, n = 21), female (63%, n = 19), and currently living in New York City (59%, n = 17) with a bachelor's degree or higher (73%, n = 22). Trust in the sponsoring institution was a key factor for subjects when deciding whether to enroll in the biobank and had the ability to influence continued participation over time. Study subjects identified their participation in a biobank as a way to contribute to biomedical research happening within the Columbia community. Altruism was cited as a reason for biobank participation as well. Subjects also considered their satisfaction with the monodirectional research model and weighed the risks of data security when deciding whether to enroll in the biobank initially. Types of information desired by subjects included learning whether their donated biospecimens had been used, summaries of studies using their sample(s) with the ability to request more detailed information if desired, and any medically actionable results arising from research that utilized their samples. The most desired modality for returning results from a research study using their sample included the use of an online access portal with an email notification that information had been updated in their portal. Preferences related to the frequency of receiving information from the biobank ranged from no communication after enrollment to quarterly communications. Our findings indicate that biomedical research participants are interested in bidirectional communication and hold a range of preferences for how they prefer to receive information. These findings provide insight into how biobanks might structure policies regarding ongoing communication, including the return of research results, as well as a roadmap for enhancing retention and enrollment during an era of precision medicine.

Keywords: biobank, dynamic consent, community engagement, return of results