title: Understanding public reactions to commercialization of biobanks and use of biobank resources.
abstract: 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.
authors.affiliation: Centre for Law and Genetics, Faculty of Law, University of Tasmania, Private Bag 89, Hobart, TAS, 7001, Australia. Electronic address: Dianne.Nicol@utas.edu.au.
authors.forename: Dianne
authors.initials: D
authors.lastname: Nicol
authors.affiliation: Centre for Law and Genetics, Faculty of Law, University of Tasmania, Private Bag 89, Hobart, TAS, 7001, Australia; Department of Statistics, Data Science and Epidemiology, Faculty of Health, Arts and Design, Swinburne University of Technology, Mail H31, P.O. Box 218, Hawthorn, VIC, 3122, Australia. Electronic address: CCritchley@swin.edu.au.
authors.forename: Christine
authors.initials: C
authors.lastname: Critchley
authors.affiliation: Centre for Law and Genetics, Faculty of Law, University of Tasmania, Private Bag 89, Hobart, TAS, 7001, Australia; Menzies Institute for Medical Research, University of Tasmania, Private Bag 23, Hobart, TAS, 7001, Australia. Electronic address: Rekekah.McWhirter@utas.edu.au.
authors.forename: Rebekah
authors.initials: R
authors.lastname: McWhirter
authors.affiliation: Centre for Law and Genetics, Faculty of Law, University of Tasmania, Private Bag 89, Hobart, TAS, 7001, Australia; Menzies Institute for Medical Research, University of Tasmania, Private Bag 23, Hobart, TAS, 7001, Australia. Electronic address: Tess.Whitton@utas.edu.au.
authors.forename: Tess
authors.initials: T
authors.lastname: Whitton
mesh_terms: D001290:Attitude; D018070:Biological Specimen Banks / Q000941:ethics* / Q000458:organization & administration / Q000639:trends; D035843:Biomedical Research / Q000941:ethics; D002202:Capital Financing / Q000941:ethics / Q000379:methods; D032882:Comprehension; D015698:Genomic Library; D006295:Health Resources / Q000639:trends; D006801:Humans; D011641:Public Relations / Q000639:trends*; D011795:Surveys and Questionnaires; D013648:Tasmania; D018581:Technology Transfer
keywords: Biobanking; Biomedical research; Commercialization; Community consultation; Deliberative democracy event; Donor perspectives; Public reaction; Survey