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Return of research results from genomic biobanks: Cost matters

机译:基因组生物库的研究结果返回:成本问题

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摘要

Return of individual research results (IRRs) to study participants has been, and continues to be, hotly debated. The role of biobanks in the return of research results had received little attention until the recent publication from Susan Wolf et al.,1 which presents a detailed discussion and 10 recommendations regarding the return of results from biobanks. The authors propose that if reidentification of an individual participant (whom they also call a "contributor") is possible, the biobank, as the central hub in a biobank research system, should enable the system to (i) clarify the criteria for evaluating findings and develop a list of returnable findings; (ii) analyze a particular finding in relation to the aforementioned list/criteria; (iii) reidentify the individual participant/contributor; and (iv) recontact them to offer the finding. Wolf et al.1 propose that the biobank would bear the long-term responsibility for the return of incidental findings (IFs) and IRRs rather than the investigators themselves. These recommendations neither sufficiently reflect the wide variability in both the purpose and nature of biobanks nor do they take into account the associated costs to biobanks and the research system. Biobanks encompass disease-specific and healthy cohorts and range from small collections in individual laboratories to international collections involving many thousands of people.
机译:将个人研究结果(IRR)返回给研究参与者一直是并且仍在引起激烈的争论。在苏珊·沃尔夫等人最近发表的论文1中,生物库在研究结果的归还中的作用一直很少受到关注,该出版物提出了有关生物库结果归还的详细讨论和10条建议。作者建议,如果有可能重新识别单个参与者(他们也称其为“贡献者”),则生物库作为生物库研究系统的中心枢纽,应使该系统能够(i)阐明评估结果的标准并制定可返回的调查结果清单; (ii)分析与上述清单/标准有关的特定发现; (iii)重新识别个人参与者/贡献者; (iv)与他们联系以提供调查结果。沃尔夫等人[1]提出,生物库将承担返回偶然发现(IF)和内部收益率的长期责任,而不是研究者本身。这些建议既未充分反映生物库目的和性质的广泛差异,也未考虑到生物库和研究系统的相关成本。生物库涵盖特定疾病和健康的人群,范围从单个实验室中的小型馆藏到成千上万的国际馆藏。

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