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Original Paper

The Impact of Commercialisation and Genetic Data Sharing Arrangements on Public Trust and the Intention to Participate in Biobank Research

Critchley C.a, b · Nicol D.c · Otlowski M.c

Author affiliations

Departments of aPsychological Sciences and bStatistics, Data Science and Epidemiology, Faculty of Health, Arts and Design, Swinburne University of Technology, Hawthorn, Vic., and cCentre for Law and Genetics, Faculty of Law, University of Tasmania, Hobart, Tas., Australia

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Public Health Genomics 2015;18:160-172

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Article / Publication Details

First-Page Preview
Abstract of Original Paper

Received: September 23, 2014
Accepted: January 22, 2015
Published online: March 13, 2015
Issue release date: April 2015

Number of Print Pages: 13
Number of Figures: 3
Number of Tables: 3

ISSN: 1662-4246 (Print)
eISSN: 1662-8063 (Online)

For additional information: https://www.karger.com/PHG

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 third-party 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.

© 2015 S. Karger AG, Basel


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Article / Publication Details

First-Page Preview
Abstract of Original Paper

Received: September 23, 2014
Accepted: January 22, 2015
Published online: March 13, 2015
Issue release date: April 2015

Number of Print Pages: 13
Number of Figures: 3
Number of Tables: 3

ISSN: 1662-4246 (Print)
eISSN: 1662-8063 (Online)

For additional information: https://www.karger.com/PHG


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