Information Privacy for Technology Users With Intellectual and Developmental Disabilities: Why Does It Matter?

Abstract

This article aims to explore the attitudes and behaviors of persons with intellectual and developmental disabilities (IDD) related to their information privacy when using information technology (IT). Six persons with IDD were recruited to participate to a series of 3 semistructured focus groups. Data were analyzed following a hybrid thematic analysis approach. Only 2 participants reported using IT every day. However, they all perceived IT use benefits, such as an increased autonomy. Participants demonstrated awareness of privacy concerns, but not in situations involving the use of technology; their awareness is not transferred to the abstract context of IT use. Privacy breaches were revealed to be a major risk for persons with IDD, who did not seem to understand how their personal information was used. Most protection mechanisms and tools reported were those suggested and implemented by caregivers and close relatives who had a great influence on the participants’ attitudes and behaviors toward IT and privacy. Our findings suggest that when using IT, persons with IDD often experience the consequences of a trade-off between autonomy and privacy. Further research and action is needed to support persons with IDD to understand and balance the benefits of IT use and the inherent threats to information privacy.

Keywords:

• privacy
• attitudes
• intellectual and developmental disabilities
• information technology
• autonomy

Acknowledgments

We express gratitude to the AGE-WELL network. We gratefully acknowledge the support in recruiting and engaging the participants with IDD in the present project that was provided by their formal caregivers. Special thanks are due to the participants, who shared both their time and their thoughts with us.

Funding

This work is supported by AGE-WELL Networks of Centres of Excellence of Canada under its Core Research Program, project WP8.3 PRIV-SENSE—Privacy, Security, and Ethics of the Use of Emerging Technologies: Development and Validation of a Framework for Research and Policy [AW CRP 2015-WP8.3].