Identifying public expectations of genetic biobanks
Identifying public expectations of genetic biobanks
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DOI：
10.1177/0963662515623925
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发表时间：
2017-08-01
影响因子：
4.1
通讯作者：
McWhirter, Rebekah
中科院分区：
文献类型：
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作者：
Critchley, Christine;Nicol, Dianne;McWhirter, Rebekah
了解生物库的公共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保持对捐赠者的尊重至关重要。本研究直接评估了公众对生物银行不同期望的相对重要性。800名澳大利亚人的全国样本的定量和定性结果显示，大多数人认为保护隐私和道德行为比最大化新的医疗保健福利更重要，而这反过来又被视为比获得特定同意，利益共享，合作和共享数据更重要。潜在类分析确定了两个不同的类显示不同的模式的期望。其中一个优先考虑尊重捐赠者的行为（n=623），另一个优先考虑加速科学发展（n=278）。从定性数据中得出的其他期望包括生物库需要透明，优先考虑其研究重点，教育公众和解决商业化问题。
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.