Understanding public reactions to commercialization of biobanks and use of biobank resources

• Published in: Social science & medicine (1982) 2016-08, Vol.162, p.79-87
• Main Authors: Nicol, Dianne, Critchley, Christine, McWhirter, Rebekah, Whitton, Tess
• Format: Article
• Language: English
• Subjects: Attitude; Biobanking; Bioethics; Biological Specimen Banks - ethics; Biological Specimen Banks - organization & administration; Biological Specimen Banks - trends; Biomedical research; Biomedical Research - ethics; Biomedicine; Capital Financing - ethics; Capital Financing - methods; Commercialization; Community consultation; Comprehension; Decisions; Deliberative democracy event; Donor perspectives; Genetics; Genomic Library; Genomics; Governance; Health Resources - trends; Health services; Humans; Medical research; Perceptions; Prejudice; Public opinion; Public reaction; Public Relations - trends; Responses; Social support; Survey; Surveys and Questionnaires; Tasmania; Technology Transfer
• ISSN: 0277-9536; 1873-5347
• DOI: 10.1016/j.socscimed.2016.06.028

Biobanks will be essential to facilitate the translation of genomic research into real improvements to healthcare. Biobanking is a long-term commitment, requiring public support as well as appropriate regulatory, social and ethical guidelines to realize this promise. There is a growing body of research that explores the necessary conditions to ensure public trust in biomedical research, particularly in the context of biobanking. Trust is, however, a complex relationship. More analysis of public perceptions, attitudes and reactions is required to understand the primary triggers that influence gain and loss of trust. Further, the outcomes of these analyses require detailed consideration to determine how to promote trustworthy institutions and practices. This article uses national survey data, combined with the results of a community consultation that took place in Tasmania, Australia in 2013, to analyze the specific issue of public reactions to commercialization of biobanks and their outputs. This research will enhance the ability of biobanks to respond preemptively to public concerns about commercialization by establishing and maintaining governance frameworks that are responsive to those concerns. The results reveal that it is possible to counter the ‘natural prejudice’ that many people have against commercialization through independent governance of biobank resources and transparency with regard to commercial involvement. Indeed, most participants agreed that they would rather have a biobank with commercial involvement than none at all. This analysis provides nuanced conclusions about public reactions towards commercialization and equips researchers and biobank operators with data on which to base policies and make governance decisions in order to tackle participant concerns respectfully and responsively. •An understanding of public perceptions is needed to appropriately govern biobanks.•Public trust is vital to biobank participation and commercialization is concerning.•Prejudice against commercialization can be countered with good governance.•Key commercialization concerns relate to benefit sharing, profit making and control.