Public trust and Global Biobank Networks

Abstract

BackgroundBiobanks provide an important foundation for genomic and personalised medicine. In order to enhance their scientific power and scope, they are increasingly becoming part of national or international networks. Public trust is essential in fostering public engagement, encouraging donation to, and facilitating public funding for biobanks. Globalisation and networking of biobanking may challenge this trust. MethodsWe report the results of an Australian study examining public attitudes to the networking and globalisation of biobanks. The study used quantitative and qualitative methods in conjunction with bioethical analysis in order to determine factors that may contribute to, and threaten, trust.ResultsOur results indicate a generally high level of trust in biobanks and in medical research more broadly. Key factors that can reduce perceived trustworthiness of biobanks are commercialisation and involvement in global networking. ConclusionsWe conclude that robust ethical oversight and governance standards can both promote trust in global biobanking and ensure that this trust is warranted.

Genetic tests as the strongest motivator of cooperation between participants and biobanks–Findings from cross-sectional study

“…The distance and even negative assessment towards the commercialization of human biological material and cooperation with private entities is also revealed in other studies. Many respondents point to concerns about the commercial use of samples, value public biobanks more than private ones and are reluctant to donate their material to commercial entities (Critchley et al, 2015;Farrugia et al, 2015;Dive et al, 2020).…”

Do biobanks need pharmacists? Support of pharmacy students to biobanking of human biological material for pharmaceutical research and development

“…Moreover, they are also anxious about the issues related to the ownership and profit sharing (Trinidad et al, 2012;Critchley et al, 2015;Tozzo and Caenazzo, 2020). For instance, Dive et al demonstrated that as the Australian respondents were strongly concerned about profit-motivated research, they were significantly less willing to donate to a biobank associated with a pharmaceutical company (57%) or a biotechnology firm (59%), then the one funded by the government (86%) or research institution (94%) (Dive et al, 2020). Another study found that while most Americans trusted academic and government researchers (92% and 80% respectively) fewer trusted researchers related to pharmaceutical company (75%) (Kaufman et al, 2009).…”