Swinburne University of Technology, Australia.
University of Tasmania, Australia.
Public Underst Sci. 2017 Aug;26(6):671-687. doi: 10.1177/0963662515623925. Epub 2016 Jan 14.
Understanding public priorities for biobanks is vital for maximising utility and efficiency of genetic research and maintaining respect for donors. This research directly assessed the relative importance the public place on different expectations of biobanks. Quantitative and qualitative results from a national sample of 800 Australians revealed that the majority attributed more importance to protecting privacy and ethical conduct than maximising new healthcare benefits, which was in turn viewed as more important than obtaining specific consent, benefit sharing, collaborating and sharing data. A latent class analysis identified two distinct classes displaying different patterns of expectations. One placed higher priority on behaviours that respect the donor ( n = 623), the other on accelerating science ( n = 278). Additional expectations derived from qualitative data included the need for biobanks to be transparent and to prioritise their research focus, educate the public and address commercialisation.
了解公众对生物库的优先事项对于最大限度地提高遗传研究的效用和效率以及维护对捐赠者的尊重至关重要。这项研究直接评估了公众对生物库的不同期望的相对重要性。对来自澳大利亚全国的 800 名样本进行的定量和定性研究结果表明，大多数人认为保护隐私和道德行为比最大限度地提高新的医疗保健益处更为重要，而这又被认为比获得具体同意、利益分享、合作和数据共享更为重要。潜在类别分析确定了两个不同的类别，它们显示出不同的期望模式。一个类别更重视尊重捐赠者的行为（n=623），另一个类别则更重视加速科学研究（n=278）。从定性数据中得出的其他期望包括生物库需要透明，并优先考虑其研究重点，对公众进行教育并解决商业化问题。
