Center for Medical Ethics and Health Policy Staff Publications
Language
English
Publication Date
5-5-2024
Journal
BMC Medical Ethics
DOI
10.1186/s12910-024-01050-y
PMID
38706004
PMCID
PMC11070093
PubMedCentral® Posted Date
5-5-2024
PubMedCentral® Full Text Version
Post-print
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.
Keywords
Automation, Decision Support Techniques, Genomics, Workflow, Interviews as Topic, Data Systems, Datasets as Topic, Software, Humans, Data access committee, Implementation science, Automation, Decision support, Genomic data, Ethics
Published Open-Access
yes
Recommended Citation
Rahimzadeh, Vasiliki; Baek, Jinyoung; Lawson, Jonathan; et al., "A Qualitative Interview Study To Determine Barriers and Facilitators of Implementing Automated Decision Support Tools for Genomic Data Access" (2024). Center for Medical Ethics and Health Policy Staff Publications. 323.
https://digitalcommons.library.tmc.edu/med_ethics/323