A qualitative interview study to determine barriers and facilitators of implementing automated decision support tools for genomic data access

IF 3 1区 哲学 Q1 ETHICS
Vasiliki Rahimzadeh, Jinyoung Baek, Jonathan Lawson, Edward S. Dove
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Abstract

Data access committees (DAC) gatekeep access to secured genomic and related health datasets yet are challenged to keep pace with the rising volume and complexity of data generation. Automated decision support (ADS) systems have been shown to support consistency, compliance, and coordination of data access review decisions. However, we lack understanding of how DAC members perceive the value add of ADS, if any, on the quality and effectiveness of their reviews. In this qualitative study, we report findings from 13 semi-structured interviews with DAC members from around the world to identify relevant barriers and facilitators to implementing ADS for genomic data access management. Participants generally supported pilot studies that test ADS performance, for example in cataloging data types, verifying user credentials and tagging datasets for use terms. Concerns related to over-automation, lack of human oversight, low prioritization, and misalignment with institutional missions tempered enthusiasm for ADS among the DAC members we engaged. Tensions for change in institutional settings within which DACs operated was a powerful motivator for why DAC members considered the implementation of ADS into their access workflows, as well as perceptions of the relative advantage of ADS over the status quo. Future research is needed to build the evidence base around the comparative effectiveness and decisional outcomes of institutions that do/not use ADS into their workflows.
一项定性访谈研究,旨在确定实施基因组数据访问自动决策支持工具的障碍和促进因素
数据访问委员会(DAC)负责对安全的基因组和相关健康数据集的访问进行把关,但却面临着跟不上数据生成量和复杂性不断增加的挑战。自动决策支持 (ADS) 系统已被证明可支持数据访问审查决策的一致性、合规性和协调性。然而,我们对 DAC 成员如何看待 ADS 对其审查质量和效率的增值作用还缺乏了解。在这项定性研究中,我们报告了对来自世界各地的 DAC 成员进行的 13 次半结构式访谈的结果,以确定在基因组数据访问管理中实施 ADS 的相关障碍和促进因素。参与者普遍支持测试 ADS 性能的试点研究,例如在编目数据类型、验证用户凭证和标记数据集使用术语方面。我们接触的 DAC 成员对过度自动化、缺乏人工监督、优先级低以及与机构使命不符等问题表示担忧,这些问题削弱了他们对 ADS 的热情。DAC成员之所以考虑在他们的访问工作流程中实施ADS,DAC运作的机构环境中对变革的紧张是一个强大的推动因素,同时也是对ADS相对于现状的优势的看法。未来的研究需要围绕在工作流程中使用或不使用 ADS 的机构的比较效果和决策结果建立证据基础。
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来源期刊
BMC Medical Ethics
BMC Medical Ethics MEDICAL ETHICS-
CiteScore
5.20
自引率
7.40%
发文量
108
审稿时长
>12 weeks
期刊介绍: BMC Medical Ethics is an open access journal publishing original peer-reviewed research articles in relation to the ethical aspects of biomedical research and clinical practice, including professional choices and conduct, medical technologies, healthcare systems and health policies.
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