Critchley Christine, Nicol Dianne, Otlowski Margaret
Department of Psychological Sciences, Faculty of Health, Arts and Design, Swinburne University of Technology, Hawthorn, Vic., Australia.
Public Health Genomics. 2015;18(3):160-72. doi: 10.1159/000375441. Epub 2015 Mar 13.
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.
An experimental design was used to assess a national sample of 1,701 Australians via a computer-assisted telephone interview.
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.
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.
生物样本库与第三方共享资源的必要性给公众信任以及参与基因研究的意愿带来了潜在风险。我们探讨了数据共享以及第三方访问类型（公共访问与私人访问）对公众信任的影响，进而探讨其对参与生物样本库研究意愿的影响。
采用实验设计，通过计算机辅助电话访谈对1701名澳大利亚人组成的全国样本进行评估。
结果显示，与公共生物样本库相比，私人生物样本库的信任度和参与意愿显著降低；与不允许第三方研究人员访问相比，允许访问时信任度和参与意愿显著降低。 somewhat令人惊讶的是，与澳大利亚第三方相比，国际第三方在这方面没有发现差异，但允许私人第三方访问时，信任度和参与意愿会显著受到侵蚀。受过大学教育的人对私人生物样本库和允许访问的生物样本库尤其不信任，而那些对基因数据库了解更多的人似乎对生物样本库与私营部门第三方共享资源更有信心。
结果模式表明，需要提高公众对生物样本库广泛共享资源必要性的认识，以维持公众信任和支持。
