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 |
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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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