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The impact of commercialisation and genetic data sharing arrangements on public trust and the intention to participate in biobank research
Citation
Critchley, CR and Nicol, D and Otlowski, M, The impact of commercialisation and genetic data sharing arrangements on public trust and the intention to participate in biobank research, Public Health Genomics, 18 pp. 160-172. ISSN 1662-4246 (2015) [Refereed Article]
Copyright Statement
© 2015 S. Karger AG,
Abstract
Objectives: The necessity for biobanks to share their resources
with third parties poses potential risks to public trust
and the intention to participate in genetic research. We explore
the effects of data sharing and the type of third-party
access (public vs. private) on public trust and, in turn, the
intention to participate in biobank research. Methods: An
experimental design was used to assess a national sample of
1,701 Australians via a computer-assisted telephone interview.
Results: The results revealed that trust and the intention
to participate significantly decreased in relation to private
compared to public biobanks, and when access to thirdparty
researchers was allowed compared to when it was not.
Somewhat surprisingly, no differences were found in relation
to the third party being international compared to Australian,
but trust and the intention to participate were significantly
eroded when private third parties were allowed
access. Those with a university education were particularly
distrustful of private biobanks and biobanks that allowed access,
while those who were more aware of genetic databases appeared more confident with biobanks sharing with private-sector third parties. Conclusion: The pattern of results
suggests that public awareness of the need for biobanks to
share their resources widely needs to be increased to maintain
public trust and support.
Item Details
Item Type: | Refereed Article |
---|---|
Research Division: | Law and Legal Studies |
Research Group: | Law in context |
Research Field: | Medical and health law |
Objective Division: | Law, Politics and Community Services |
Objective Group: | Justice and the law |
Objective Field: | Law reform |
UTAS Author: | Critchley, CR (Associate Professor Christine Critchley) |
UTAS Author: | Nicol, D (Professor Dianne Nicol) |
UTAS Author: | Otlowski, M (Professor Margaret Otlowski) |
ID Code: | 107308 |
Year Published: | 2015 |
Funding Support: | Australian Research Council (DP110100694) |
Web of Science® Times Cited: | 37 |
Deposited By: | Faculty of Law |
Deposited On: | 2016-03-09 |
Last Modified: | 2017-02-16 |
Downloads: | 0 |
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