Heading: How do citizens view forced unconsented access to their own smartphone data during medical emergency situations?

Paper title: Unconsented Data Transfusions: Attitudes Towards Extracting Personal Device Data for Public Health Emergencies

Author 1: Colin Watson c.watson8@newcastle.ac.uk
Author 2: Jan David Smeddinck jan.smeddinck@newcastle.ac.uk

Open Lab, Newcastle University, United Kingdom

Conference: Mensch und Computer 2020
6-9 September 2020, Magdeburg, Germany

https://doi.org/10.1145/3404983.3409994

1. At a glance

User attitudes were collected through a small-scale proof of concept focus group approach to reveal what citizens’ opinions may be towards extraction of medical data from their smartphones in the event of a public health incident. The study found:

* Smartphones are viewed akin to organs or limbs, where forced access, without consent, is assault

* The benefits to society of unconsented access to medical and other personal data on mobile devices must be overwhelming before such acquisition is considered acceptable

* The analysis also points to the difficulty of gaining consent, a lack of knowledge about legal aspects, and a distrust about the state collecting data.

2. Method

Convenient subjects were self-selecting digitally literate trainee researchers from non-vulnerable groups, aged 20-39 years old, living in England took part in semi-structured discussion groups:
* Single-participant pilot
* Three-participant pre-study.

The assisted discussion was framed to illicit a range of views, moving from a general medical data consent topic to more specific national emergency issues:
* Heart condition
* Tuberculosis 
* Influenza pandemic.

Inductive thematic analysis on the verbatim transcribed audio recordings was performed using visually and textually supported creative mind-mapping to identify themes (Figure A).

Figure A: Illustrations of the four approaches to theme generation from the coded transcribed data

Figure B: Playing cards from the fourth theme generation approach

3. How do people perceive their smartphones?

Smartphones can be perceived as tools forming extensions to human bodies, not merely in a McLuhanian metaphorical sense, but quite directly with innate emotional relevance to the people using the technology. 

4. What is particularly interesting in the findings?

The findings highlight a high degree of reluctance by the participants to any form of unconsented access in the absence of overwhelming evidence of greater society-wide benefits.

5. What is happening now?

The discussions were executed before the coronavirus/COVID-19 pandemic and the resulting grave international impact became apparent. In the light of this, lockdowns and deployments of digital technologies for data collection for public health purposes such as contact-tracing applications, we are currently augmenting this work with follow-up studies and also to investigate the quantitative differences between the presented scenarios.

Credits: This work was funded through the EPSRC Centre for Doctoral Training in Digital Civics at Newcastle University (EP/L016176/1). Playing card designs are based on "Different Playing Card Vector Graphic" by Starder at freedesignfile and downloaded from all-free-download.com using a creative commons attribution license, and were modified to change the central parts of the card faces and the whole of their backs. Video-player icon by Mourad Mokrane from the Noun Project.

Reference: v1.0 MuC 2020 poster (28 July 2020)