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    Leveraging Algorithms to Improve Decision-Making Workflows for Genomic Data Access and Management


    Rahimzadeh, Vasiliki, Lawson, Jonathan, Rushton, Greg and Dove, Edward (2022) Leveraging Algorithms to Improve Decision-Making Workflows for Genomic Data Access and Management. Biopreservation and Biobanking, 20 (5). pp. 429-435. ISSN 1947-5535

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    Abstract

    Studies on the ethics of automating clinical or research decision making using artificial intelligence and other algorithmic tools abound. Less attention has been paid, however, to the scope for, and ethics of, automating decision making within regulatory apparatuses governing the access, use, and exchange of data involving humans for research. In this article, we map how the binary logic flows and real-time capabilities of automated decision support (ADS) systems may be leveraged to accelerate one rate-limiting step in scientific discovery: data access management. We contend that improved auditability, consistency, and efficiency of the data access request process using ADS systems have the potential to yield fairer outcomes in requests for data largely sourced from biospecimens and biobanked samples. This procedural justice rationale reinforces a broader set of participant and data subject rights that data access committees (DACs) indirectly protect. DACs protect the rights of citizens to benefit from science by bringing researchers closer to the data they need to advance that science. DACs also protect the informational dignities of individuals and communities by ensuring the data being accessed are used in ways consistent with participant values. We discuss the development of the Global Alliance for Genomics and Health Data Use Ontology standard as a test case of ADS for genomic data access management specifically, and we synthesize relevant ethical, legal, and social challenges to its implementation in practice. We conclude with an agenda of future research needed to thoughtfully advance strategies for computational governance that endeavor to instill public trust in, and maximize the scientific value of, health-related human data across data types, environments, and user communitie
    Item Type: Article
    Keywords: automated decision system; data access committee; ethics; genomics; health;
    Academic Unit: Assisting Living & Learning,ALL institute
    Faculty of Social Sciences > Law
    Item ID: 19851
    Identification Number: 10.1089/bio.2022.0042
    Depositing User: Edward Dove
    Date Deposited: 21 May 2025 14:37
    Journal or Publication Title: Biopreservation and Biobanking
    Publisher: Mary Ann Liebert
    Refereed: Yes
    Related URLs:
    URI: https://mural.maynoothuniversity.ie/id/eprint/19851
    Use Licence: This item is available under a Creative Commons Attribution Non Commercial Share Alike Licence (CC BY-NC-SA). Details of this licence are available here

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