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Andy Alorwu, Saba Kheirinejad, Niels van Berkel, Marianne Kinnula, Denzil Ferreira, Aku Visuri, and Simo Hosio. 2021. Assessing MyData Scenarios: Ethics, Concerns, and the Promise. In Proceedings of the 2021 CHI Conference on Human Factors in Computing Systems (CHI '21). Association for Computing Machinery, New York, NY, USA, Article 209, 1–11. DOI:https://doi.org/10.1145/3411764.3445213

Assessing MyData scenarios : ethics, concerns, and the promise

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Author: Alorwu, Andy1; Kheirinejad, Saba1; van Berkel, Niels2;
Organizations: 1University of Oulu, Oulu, Finland
2Aalborg University, Aalborg, Denmark
Format: article
Version: accepted version
Access: open
Online Access: PDF Full Text (PDF, 0.9 MB)
Persistent link: http://urn.fi/urn:nbn:fi-fe2021052130973
Language: English
Published: Association for Computing Machinery, 2021
Publish Date: 2021-05-21
Description:

Abstract

Public controversies around the unethical use of personal data are increasing, spotlighting data ethics as an increasingly important field of study. MyData is a related emerging vision that emphasizes individuals’ control of their personal data. In this paper, we investigate people’s perceptions of various data management scenarios by measuring the perceived ethicality and level of felt concern concerning the scenarios. We deployed a set of 96 unique scenarios to an online crowdsourcing platform for assessment and invited a representative sample of the participants to a second-stage questionnaire about the MyData vision and its potential in the field of healthcare. Our results provide a timely investigation into how topical data-related practices affect the perceived ethicality and the felt concern. The questionnaire analysis reveals great potential in the MyData vision. Through the combined quantitative and qualitative results, we contribute to the field of data ethics.

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ISBN Print: 978-1-4503-8096-6
Article number: 209
DOI: 10.1145/3411764.3445213
OADOI: https://oadoi.org/10.1145/3411764.3445213
Host publication: Proceedings of the 2021 CHI Conference on Human Factors in Computing Systems
Conference: ACM SIGCHI Annual Conference on Human Factors in Computing Systems
Type of Publication: A4 Article in conference proceedings
Field of Science: 113 Computer and information sciences
Subjects:
Crowdsourcing
Ethics
Healthcare
MyData
Privacy
Article
Funding: This research is connected to the GenZ strategic profling project at the University of Oulu, supported by the Academy of Finland (project number 318930), and CRITICAL (Academy of Finland Strategic Research, 335729). Part of the work was also carried out with the support of Biocenter Oulu, spearhead project ICON.
Academy of Finland Grant Number: 318930
335729
Detailed Information: 318930 (Academy of Finland Funding decision)
335729 (Academy of Finland Funding decision)
Copyright information: © 2021 Association for Computing Machinery. This is the author's version of the work. It is posted here for your personal use. Not for redistribution. The definitive Version of Record was published in Proceedings of the 2021 CHI Conference on Human Factors in Computing Systems, https://doi.org/10.1145/3411764.3445213.