Dynamic consent has been proposed as a strategy for addressing the limitations of traditional, broad consent for biobank participation. Although the argument for dynamic consent has been made on theoretical grounds, empirical studies evaluating the potential utility of dynamic consent are needed to enhance deliberations about the merits of dynamic consent. Few studies have assessed such considerations as whether donor preferences may change over time or if participants would use a dynamic consent mechanism to modify preferences when they change. We administered a 66-item survey to participants in a large DNA biobank. The survey sought to gauge the stability of donor preferences specified at the time of biobank enrollment, specifically the stability of donors' preference regarding posthumous availability of biospecimens to next-of-kin. We received 1164 completed surveys for a response rate of 72%. Forty percent of respondents indicated a preference regarding sample availability on the survey (T2) that was inconsistent with the preference they had expressed when they enrolled in the biobank (T1). Most (94%) individuals with inconsistent preferences regarding sample availability had initially restricted sample availability at T1 but were comfortable with broader availability when asked at the time of the survey (T2). Our findings demonstrate that preferences regarding sample use expressed at the time of enrollment in a DNA biobank may not be reliable indicators of donor preferences over time. These findings lend empirical support to the case for a dynamic consent model in which biobank participants are approached over time to clarify their views regarding sample use.

中文翻译：

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评估生物库供体关于样本使用的偏好的稳定性：支持动态同意价值的证据。

已经提出动态同意作为解决传统的，广泛同意的生物库参与的局限性的策略。尽管有关动态同意的论点是在理论基础上提出的，但仍需要对动态同意的潜在效用进行评估的经验研究，以加强对动态同意的优缺点的讨论。很少有研究评估这样的考虑因素，例如捐赠者的偏好是否会随着时间而改变，或者参与者在改变偏好时是否会使用动态同意机制来修改偏好。我们对大型DNA生物库中的参与者进行了66个项目的调查。该调查旨在评估生物银行注册时指定的捐赠者偏好的稳定性，特别是捐赠者关于遗体可否获得亲属的生物样本的偏好的稳定性。我们收到了1164份完成的调查，答复率为72％。40％的受访者表示对调查样本的可利用性（T2）的偏好与他们进入生物库时所表达的偏好（T1）不一致。多数（94％）对样品可用性的偏好不一致的人最初在T1时限制了样品的可用性，但在调查时（T2）被问及对更广泛的可用性感到满意。我们的发现表明，在DNA生物库中注册时表达的关于样品使用的偏好可能不是随时间推移捐赠者偏好的可靠指标。这些发现为动态同意模型的案例提供了经验支持，在该模型中，随着时间的推移会接触生物库参与者以阐明他们对样本使用的观点。