TY - JOUR
T1 - Understanding public reactions to commercialization of biobanks and use of biobank resources
AU - Nicol, Dianne
AU - Critchley, Christine
AU - McWhirter, Rebekah
AU - Whitton, Tess
N1 - Publisher Copyright:
© 2016 Elsevier Ltd
PY - 2016/8/1
Y1 - 2016/8/1
N2 - 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.
AB - 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.
KW - Biobanking
KW - Biomedical research
KW - Commercialization
KW - Community consultation
KW - Deliberative democracy event
KW - Donor perspectives
KW - Public reaction
KW - Survey
UR - http://www.scopus.com/inward/record.url?scp=84975801233&partnerID=8YFLogxK
U2 - 10.1016/j.socscimed.2016.06.028
DO - 10.1016/j.socscimed.2016.06.028
M3 - Article
C2 - 27343817
AN - SCOPUS:84975801233
SN - 0277-9536
VL - 162
SP - 79
EP - 87
JO - Social Science and Medicine
JF - Social Science and Medicine
ER -