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Biobanks and Individual Health Related Findings: from an Obstacle to an Incentive
Science and Engineering Ethics ( IF 3.7 ) Pub Date : 2021-08-11 , DOI: 10.1007/s11948-021-00330-9
Jurate Lekstutiene 1 , Søren Holm 2, 3 , Eugenijus Gefenas 1
Affiliation  

Despite the benefits biobanks are expected to bring, there have recently been concerns raised that the public and private non-profit biobanks still prevailing in Europe often fail to reach their initial objectives due to a variety of reasons, including a shortage of funding and insufficient utilization of collections. The necessity to find new ways to manage biobanks has been clearly recognized and one way to do this is to follow the success of some commercial direct-to-consumer genetic testing (DTC GT) companies in the biobanking field. This paper is focused on a double role the return of individual health related findings (IHRF) detected through the biobanking activities can play in the management of biobanks. These findings can be seen as an untapped opportunity to offer health related information to biobank participants. At the same time, the IHRF policy can also serve as an additional tool that can improve biobanking governance. This paper aims to consider diverse IHRF approaches as well as to explore some key ethical concerns related to them. In particular, it reveals how different accounts of personal autonomy shape consent policies related to IHRF and emphasizes ethical controversies related to the commercial DTC GT initiatives as well as some non-profit biobanks.



中文翻译:

生物库和个人健康相关发现:从障碍到激励

尽管生物库有望带来好处,但最近有人担心,由于资金短缺和利用率不足等多种原因,欧洲仍然盛行的公共和私人非营利生物库往往无法实现其最初目标的集合。寻找管理生物样本库的新方法的必要性已得到明确认识,其中一种方法是追随一些商业直接面向消费者的基因检测 (DTC GT) 公司在生物样本库领域的成功。本文的重点是通过生物库活动检测到的个人健康相关发现 (IHRF) 的返回可以在生物库管理中发挥双重作用。这些发现可以被视为向生物样本库参与者提供健康相关信息的未开发机会。同时,IHRF 政策还可以作为改善生物样本库治理的附加工具。本文旨在考虑各种 IHRF 方法,并探讨与它们相关的一些关键伦理问题。特别是,它揭示了个人自主权的不同账户如何塑造与 IHRF 相关的同意政策,并强调与商业 DTC GT 倡议以及一些非营利生物库相关的伦理争议。

更新日期:2021-08-11
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