Biobank Recruitment: Motivations for Nonparticipation
Biobank Recruitment: Motivations for Nonparticipation
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DOI：
10.1089/bio.2009.0006
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发表时间：
2009-06-01
影响因子：
1.6
通讯作者：
Johnson, Cheryl
中科院分区：
文献类型：
--
作者：
Goddard, Katrina A. B.;Smith, K. Sabina;Johnson, Cheryl
对于基因组学研究至关重要的分子数据，可以更有效地在大规模的、基于人群的遗传物质生物库中获取，而不是通过单独的研究。生物库还提供更高质量和可靠性的遗传样本，并通过自动化样本检索提供访问。然而，充分告知参与者研究的广泛性质以及参与的风险和益处是一项挑战。此外，最近的研究表明，对数据共享和研究结果的回报，或未来的研究主题（例如，刻板印象或潜在的污名化特征）的关注。我们评估了参与生物库的兴趣和不参与的原因。
Molecular data, essential for genomics research, can be captured more efficiently in large-scale, population-based biobanks of genetic material rather than by individual studies. Biobanks also offer improved quality and reliability of genetic samples and access through automated sample retrieval. However, it is challenging to adequately inform participants of the broad nature of the research and participation risks and benefits. In addition, recent studies suggest concerns about data sharing and return of research results, or future research topics (eg, stereotypical or potentially stigmatizing traits). We evaluated the interest in participating in a biobank and reasons for nonparticipation.