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首页> 外文期刊>Biopreservation and biobanking >Managing the Unimaginable: Biobank Participant Views on Reconsent for Whole Genome Sequencing of Stored Biospecimens
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Managing the Unimaginable: Biobank Participant Views on Reconsent for Whole Genome Sequencing of Stored Biospecimens

机译：管理难以想象的：Biobank参与者对储存生物组织的全基因组测序的解释的视图

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Background: DNA biobanks frequently obtain broad permissions from sample donors, who agree to allow their biospecimens to be used for a variety of future purposes. A limitation of this approach is that it may not be possible to discuss or anticipate all potential uses of biospecimens at the time patient consent is obtained. We surveyed biobank participants to clarify their views regarding the need to be informed about research involving whole genome sequencing (WGS). Methods: We invited 1200 participants in the Mayo Clinic Biobank to complete a survey inquiring about their support for WGS; their interest in being recontacted before WGS of their biospecimens; whether they would consent to WGS if asked; and the acceptability of proceeding with WGS if sample donors could not be reached. Results: Six hundred eighty-seven biobank participants returned completed surveys (57% response). More than 96% of biobank participants were supportive of WGS and would give permission for WGS of their sample, if asked. Nonetheless, 61% of biobank participants felt they should be recontacted before WGS was done. Participants were divided regarding the permissibility of conducting WGS if efforts to recontact sample donors were unsuccessful. Discussion: Our findings highlight a potential discrepancy between the broad permissions granted by biobank participants at the time they donated biospecimens and their views about the application of WGS to their samples. Biobank participants appear to value the ability to confirm their commitment to genetic research when the studies in question involve WGS, a technological capacity they may not have anticipated at the time they donated their biospecimens. Efforts to reevaluate biobank participants' views about the acceptability of new technologies may help to ensure alignment of participants' current beliefs and research applications that would have been difficult to anticipate at the time biospecimens were collected.
机译：背景：DNA Biobanks经常获得来自样本捐赠者的广泛权限，他同意允许其生物自化目的用于各种未来的目的。这种方法的限制是，在获得患者同意时可能无法讨论或预测生物学中的所有潜在用途。我们调查了Biobank参与者，以澄清他们有关需要了解涉及全基因组测序（WG）的研究的意见。方法：我们邀请了1200名参与者在Mayo Clinic Biobank中完成了对WGS支持的调查询问;他们对在其生物开发的WG之前重新开始的兴趣;如果被问及他们是否同意WGS;如果无法达到样品捐赠者，则继续使用WGS的可接受性。结果：六百八十七个Biobank参与者返回完成调查（57％的反应）。如果被问及，超过96％的Biobank参与者支持WGS的支持，并赋予其样本的WGS。尽管如此，61％的Biobank参与者觉得他们应该在WGS完成之前重新接触。如果努力再接触样本捐赠者的努力是不成功的，参与者分为参与者进行允许的允许性。讨论：我们的调查结果强调了Biobank参与者在捐赠生物起草的广泛权限之间的潜在差异，以及他们关于WGS对其样品的应用的看法。 Biobank参与者似乎重视确认他们对遗传研究承诺的能力，当有问题的研究涉及WGS时，他们在捐赠生物开发时可能无法预料的技术能力。重新评估生物银行参与者对新技术可接受性的看法可能有助于确保参与者的当前信仰和研究应用程序，这些应用难以在收集生物起草的时间难以预测。

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