A leap of faith: building the trust in human biobanks

Abstract

Background: Human biobanks are an essential resource for contemporary medical research, crucial in treating and preventing human diseases and improving health. Public trust in human biobanks is a vital social prerequisite for their continued operation and related research.Methods: Drawing on the “leap of faith” theory proposed by Georg Simmel and Guido Möllering, this paper first examines the relationship between public trust and human biobanks and the process through which such trust is established. Subsequently, based on the results of this analysis, targeted policy recommendations are put forward to consolidate or enhance public trust in human biobanks.Results: Public trust in human biobanks stems from certain “good reasons,” through which uncertainty and vulnerability are “suspended” by faith, leading to a leap toward the “land of expectations.” In this progress, the critical factors in building and enhancing public trust in human biobanks are the public’s propensity to trust, the inherent trustworthiness of human biobanks, and the security and interactivity of the trust environment.Conclusion: Public trust in human biobanks cannot be determined by any universal formula, as it is influenced by many factors, including intangible elements such as faith that defy empirical understanding. Nonetheless, public trust in human biobanks can be enhanced through measures such as fostering the public’s propensity to trust, enhancing the inherent trustworthiness of human biobanks, establishing structural safeguards for the trust environment through ethical norms, systems, and supervision, and promoting public participation.

Trust and Support for Cancer Research Biobanks: Insights from Cancer Patients in Poland

“…Thus, this study confirms that patients’ altruistic attitudes, exemplified by their support for biobank research and willingness to share their tissues left over after medical procedures for research purposes, are mediated by their perception of various types of biomedical research and biobanking institutions, which may together stimulate people’s trust in biomedical research and biobank participation [ 14 – 26 ].…”

“…While there are many factors behind people’s willingness to participate in biobank research, our results suggest that social trust plays a crucial role in fostering successful cooperation with the donors, which may in turn stimulate further development of biobank research in Poland [ 14 – 26 ]. Although most patients expressed strong support for research biobanks, this study shows that patients’ support was not unconditional.…”

“…In fact, a growing body of research stress the fundamental role of trust in the success of biobank research, as it ensures the long-term cooperation and relationship with research participants and the donors [ 14 – 18 ]. On the other hand, lack or loss of trust in biobanking institutions, scientific research or scientists can hinder people’s willingness to donate their biological material for scientific purposes [ 19 – 26 ].…”

“…Moreover, building and cultivation of public trust in research biobanks is of particular importance in late-modern societies often characterized by the declining social trust in scientific knowledge and expertise [ 29 , 30 ]. Indeed, although since the 1990s most Europeans express optimism about science and biotechnology, especially when they expect medical applications and benefits for human health [ 26 , 27 ], over the past few years research reveal declining social trust and confidence in scientific information about biotechnology [ 19 , 21 , 22 , 26 ]. Consequently, there is a growing public skepticism or resistance towards such biotechnologies as gene editing though CRISPR-Cas9 technology [ 31 , 32 ], (COVID-19) vaccines [ 33 – 35 ] or research biobanks [ 36 – 38 ].…”

“…Since the success of biobank research requires constant cooperation with the donors, including patients, who share their biospecimens for research purposes, building social trust toward biobanking institutions and knowing the factors influencing patients’ willingness to donate for biomedical research is of crucial importance [ 14 – 26 ]. However, while most previous studies conducted in Poland have assessed the awareness of biobank research and the willingness and motivations to donate biospecimens for research purposes among the general population [ 55 , 56 , 59 ] or medical students [ 57 , 58 ], much less is known about the perspective of cancer patients.…”