Assessing MyData scenarios : ethics, concerns, and the promise
Alorwu, Andy; Kheirinejad, Saba; van Berkel, Niels; Kinnula, Marianne; Ferreira, Denzil; Visuri, Aku; Hosio, Simo (2021-05-20)
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
© 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.
https://rightsstatements.org/vocab/InC/1.0/
https://urn.fi/URN:NBN:fi-fe2021052130973
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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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