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It's the Wild, Wild West: Lessons Learned From IRB Members' Risk Perceptions Toward Digital Research Data

Authors:

Emilee RaderAuthors Info & Claims

Proceedings of the ACM on Human-Computer Interaction, Volume 4, Issue CSCW1

Article No.: 59, Pages 1 - 22

https://doi.org/10.1145/3392868

Published: 29 May 2020 Publication History

Abstract

Digital technology that is prevalent in people's everyday lives, including smart home devices, mobile apps and social media, increasingly lack regulations for how the user data can be collected, used or disseminated. The CSCW and the larger computing community continue to evaluate and understand the potential negative impacts of research involving digital technologies. As more research involves digital data, Institutional Review Boards (IRBs) take on the difficult task of evaluating and determining risks--likelihood of potential harms--from digital research. Learning more about IRBs' role in concretizing harm and its likelihood will help us critically examine the current approach to regulating digital research, and has implications for how researchers can reflect on their own data practices. We interviewed 22 U.S.-based IRB members and found that, for the interviewees, "being digital" added a risk. Being digital meant increasing possibilities of confidentiality breach, unintended collection of sensitive information, and unauthorized data reuse. Concurrently, interviewees found it difficult to pinpoint the direct harms that come out of those risks. The ambiguous, messy, and situated contexts of digital research data did not fit neatly into current human subjects research protection protocols. We discuss potential solutions for understanding risks and harms of digital technology and implications for the responsibilities of the CSCW and the larger computing community in conducting digital research.

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Cited By

Throne RHendon MKozinski J(2024)Graduate Student InvestigatorIRB, Human Research Protections, and Data Ethics for Researchers10.4018/979-8-3693-3848-3.ch012(289-308)Online publication date: 15-Nov-2024
https://doi.org/10.4018/979-8-3693-3848-3.ch012
Zhao RZhao JChua TNgo CKa-Wei Lee RKumar RLauw H(2024)Perennial Semantic Data Terms of Use for Decentralized WebProceedings of the ACM Web Conference 202410.1145/3589334.3645631(2238-2249)Online publication date: 13-May-2024
https://dl.acm.org/doi/10.1145/3589334.3645631
Throne RHendon MKozinski J(2023)Graduate Student InvestigatorDynamic Curriculum Development and Design Strategies for Effective Online Learning in Higher Education10.4018/978-1-6684-8646-7.ch001(1-15)Online publication date: 1-Sep-2023
https://doi.org/10.4018/978-1-6684-8646-7.ch001
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Index Terms

It's the Wild, Wild West: Lessons Learned From IRB Members' Risk Perceptions Toward Digital Research Data
1. Human-centered computing
  1. Human computer interaction (HCI)

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cover image Proceedings of the ACM on Human-Computer Interaction

Proceedings of the ACM on Human-Computer Interaction Volume 4, Issue CSCW1

CSCW

May 2020

1285 pages

EISSN:2573-0142

DOI:10.1145/3403424

Editors:
Cliff Lampe
University of Michigan
,
Jeff Nichols
Google
,
Karrie Karahalios
University of Illinois Urbana-Champaign
,
Geraldine Fitzpatrick
Vienna University of Technology
,
Uichin Lee
KAIST
,
Andres Monroy-Hernandez
Microsoft Research
,
Wolfgang Stuerzlinger
Simon Fraser University, Canada

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Publication History

Published: 29 May 2020

Published in PACMHCI Volume 4, Issue CSCW1

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Cited By

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https://doi.org/10.4018/979-8-3693-3848-3.ch012
Zhao RZhao JChua TNgo CKa-Wei Lee RKumar RLauw H(2024)Perennial Semantic Data Terms of Use for Decentralized WebProceedings of the ACM Web Conference 202410.1145/3589334.3645631(2238-2249)Online publication date: 13-May-2024
https://dl.acm.org/doi/10.1145/3589334.3645631
Throne RHendon MKozinski J(2023)Graduate Student InvestigatorDynamic Curriculum Development and Design Strategies for Effective Online Learning in Higher Education10.4018/978-1-6684-8646-7.ch001(1-15)Online publication date: 1-Sep-2023
https://doi.org/10.4018/978-1-6684-8646-7.ch001
Obenauer W(2023)Like Superman, Institutional Review Boards Play an Important Role, But When Unchecked Can Cause Significant Collateral Damage: Five Reasons That it is Time to Reset Institutional Review BoardsGroup & Organization Management10.1177/1059601123119835950:1(359-369)Online publication date: 25-Aug-2023
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Lee HLee U(2021)Dynamic Consent for Sensor-Driven Research2021 Thirteenth International Conference on Mobile Computing and Ubiquitous Network (ICMU)10.23919/ICMU50196.2021.9638790(1-6)Online publication date: 17-Nov-2021
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Ferretti AIenca MSheehan MBlasimme ADove EFarsides BFriesen PKahn JKarlen WKleist PLiao SNebeker CSamuel GShabani MRivas Velarde MVayena E(2021)Ethics review of big data research: What should stay and what should be reformed?BMC Medical Ethics10.1186/s12910-021-00616-422:1Online publication date: 30-Apr-2021
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