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

Chalghoumi, Hajer; Cobigo, Virginie; Dignard, Crislee; Gauthier-Beaupré, Amélie; Jutai, Jeffrey; Lachapelle, Yves; Lake, Johanna K.; Mcheimech, Rawad; Perrin, Maxine

doi:10.1080/10508422.2017.1393340

Cited by 20 publications

(10 citation statements)

References 57 publications

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“…Launched in May 2018, the General Data Protection Regulation (GDPR) is the novel European Union-wide law on data protection a significant step towards more responsible protection of individuals (Crutzen et al, 2019). While it is recognized that participation in research is based on affirmative, unambiguous, voluntary, informed, and specific consent (Mendelson, 2018), people with advanced dementia or intellectual and developmental disabilities are not able to give informed consent or understand the consequences of data acquisition (Friedman and Rizzolo, 2017;Chalghoumi et al, 2019;Timmers et al, 2019). Article 6 of the GDPR addresses this issue by including provisions that protecting persons with dementia and their relatives from being coerced into providing consent without awareness of how their data will be used (Cool, 2019;Crutzen et al, 2019).…”

Section: Discussionmentioning

confidence: 99%

“…e) Beneficence/non-maleficence: Monitoring may reduce costs, but increasing isolation. Chalghoumi et al Canada (Chalghoumi H, et al, 2019) 2019 Focus group interviews with 6 people with I/DD People show awareness of privacy concerns but not due to the use of technology. Privacy breaches are a major risk in I/ DD: they do not understand the use of personal information and are vulnerable to biases in data collection.…”

Section: Limitationsmentioning

confidence: 99%

“…Finally, we discuss the potential pitfalls of this technology, specifically related to issues around ethics, privacy and security of data (Bantry-White, 2018;Chalghoumi et al, 2019) and the scalability of these technologies in terms to social living and activities.…”

Section: Introductionmentioning

confidence: 99%

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Sensing Technology to Monitor Behavioral and Psychological Symptoms and to Assess Treatment Response in People With Dementia. A Systematic Review

et al. 2020

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Background: The prevalence of dementia is expected to rapidly increase in the next decades, warranting innovative solutions improving diagnostics, monitoring and resource utilization to facilitate smart housing and living in the nursing home. This systematic review presents a synthesis of research on sensing technology to assess behavioral and psychological symptoms and to monitor treatment response in people with dementia. Methods: The literature search included medical peer-reviewed English language publications indexed in Embase, Medline, Cochrane library and Web of Sciences, published up to the 5 th of April 2019. Keywords included MESH terms and phrases synonymous with "dementia", "sensor", "patient", "monitoring", "behavior", and "therapy". Studies applying both cross sectional and prospective designs, either as randomized controlled trials, cohort studies, and case-control studies were included. The study was registered in PROSPERO 3 rd of May 2019. Results: A total of 1,337 potential publications were identified in the search, of which 34 were included in this review after the systematic exclusion process. Studies were classified according to the type of technology used, as (1) wearable sensors, (2) nonwearable motion sensor technologies, and (3) assistive technologies/smart home technologies. Half of the studies investigated how temporarily dense data on motion can be utilized as a proxy for behavior, indicating high validity of using motion data to monitor behavior such as sleep disturbances, agitation and wandering. Further, up to half of the studies represented proof of concept, acceptability and/or feasibility testing. Overall, the technology was regarded as non-intrusive and well accepted. Conclusions: Targeted clinical application of specific technologies is poised to revolutionize precision care in dementia as these technologies may be used both by patients and caregivers, and at a systems level to provide safe and effective care. To

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Section: Discussionmentioning

confidence: 99%

Section: Limitationsmentioning

confidence: 99%

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Sensing Technology to Monitor Behavioral and Psychological Symptoms and to Assess Treatment Response in People With Dementia. A Systematic Review

et al. 2020

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“…A Privacy by Design approach could mitigate some tensions between privacy and usability concerns, given that some privacy protection measures may affect usability for some people with CD. 42 Such an approach would ease some concerns participants expressed about considering privacy protection at various stages of development prior to commercialization. Implementation of a Privacy by Design approach, particularly if structured, may also serve to satisfy the need for guidance throughout the software development cycle, something at least one participant identified as a need.…”

Section: Practices Related To Privacy Protectionmentioning

confidence: 99%

Protecting the privacy of technology users who have cognitive disabilities: Identifying areas for improvement and targets for change

Cobigo

Czechowski

Chalghoumi

et al. 2020

Journal of Rehabilitation and Assistive Technologies Engineerin

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Introduction Information Technologies (IT) may serve assistive roles that facilitate the interaction of people living with cognitive disabilities (CD) within their environments. However, there are some notable concerns related to privacy threats associated with the use of IT. The purpose of this study was to examine how assistive technology developers may best adapt over time to develop their IT to be resilient against threats to privacy. We therefore focused on the following areas: (1) developers’ knowledge and practices related to privacy protection; (2) challenges when applying recommended practices, and; (3) preferred channels to acquire knowledge. Method We conducted semi-structured interviews with ten technology developers who are members of the AGE-WELL network undertaking research and development of assistive technologies to be used by people who have cognitive disabilities. We used an inductive-deductive method for the analysis of qualitative data to examine participant responses and generate themes related to the study goals. Results Principal themes that emerged from the data include practices specific to populations with CD, challenges to obtaining consent to use of information, and preferred channels to acquire knowledge. Conclusion We identify areas of focus for developing a knowledge mobilization strategy to improve relevant policies and practices.

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“…Persons with IDD can be naïve and not well-informed regarding their use of technologies, making them especially vulnerable. For instance, a study on the use of IT by PIDD found that “privacy breaches were revealed to be a major risk for persons with IDD, who did not seem to consistently understand that they should protect their personal information and how it could be used by third parties” ( 20 ).…”

Section: Assistive Technologies Undermining the Autonomy Of Usersmentioning

confidence: 99%

Autonomy Benefits and Risks of Assistive Technologies for Persons With Intellectual and Developmental Disabilities

O’Brolcháin

2018

Front. Public Health

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This paper explores the ways in which assistive technologies (ATs) can both promote and undermine the autonomy of Persons with Intellectual and Developmental Disabilities (PIDD). Following an initial discussion of ATs for PIDD, I examine the specific issues of autonomy for PIDD. I outline the ways in which ATs can boost autonomy, of PIDD, focusing on knowledge, authenticity, and liberty. Following that I suggest that ATs are not necessarily beneficial in terms of autonomy and examine ways that they might be used to undermine the autonomy of PIDD, specifically the categories of knowledge, authenticity, and liberty. I conclude by suggesting that the development of ATs requires ethical oversight.

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

Cited by 20 publications

References 57 publications

Sensing Technology to Monitor Behavioral and Psychological Symptoms and to Assess Treatment Response in People With Dementia. A Systematic Review

Sensing Technology to Monitor Behavioral and Psychological Symptoms and to Assess Treatment Response in People With Dementia. A Systematic Review

Protecting the privacy of technology users who have cognitive disabilities: Identifying areas for improvement and targets for change

Autonomy Benefits and Risks of Assistive Technologies for Persons With Intellectual and Developmental Disabilities

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