Privacy and Future Consent in Smart Homes as Assisted Living Technologies

Thorstensen, Erik

doi:10.1007/978-3-319-92037-5_30

Cited by 11 publications

(10 citation statements)

References 54 publications

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“…As technology evolves, both the disclosure and the recommendation phases, proposed by Beauchamp and Childress, might be operationalised by machines [14]. Articles 13, 14 and 15, in Section 2 of GDPR specifically refers to meaningful information being provided on the logic involved in automated decision-making "as well as the significance and the envisaged consequences of such processing for the data subject."…”

Section: Discussionmentioning

confidence: 99%

“…While capturing written, verbal and implied consent from people living with dementia for research projects and/or medical treatment(s) is well documented [13], evidence of how developers should implement eConsent, vis-à-vis assistive technologies (mobile applications), is less clear [11]. Recent calls [6,7,14,15] have proposed for more research to be conducted to fully understand the implications around eConsent via assistive technologies.…”

Section: Introductionmentioning

confidence: 99%

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Implementing Electric Consent Aimed at People Living with Dementia and Their Caregivers: Did We Forget Those Who Forget?

O’Connor

Twohig²,

O’Brien³

2021

Proceedings of the Annual Hawaii International Conference on System Sciences

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As policy flows down from law and/or regulation (e.g. GDPR) our individual privacy concerns give rise to demands on improving accessibility, awareness and comprehension, the topic of eConsent is becoming more prevalent. We provide a critical voice by considering, but also challenging, the underlying assumptions that the status quo of eConsent design and implementation is appropriate for all people in society. By answering "what eConsent characteristics are prevalent in the context of dementia applications?", this paper identifies that the "one size fits all" ethos for eConsent is not applicable in every context. As a result, a taxonomy that depicts the multifaceted concept of eConsent is proposed. It makes us aware of the different ethical, legal, social and technical implications of ICT use and provides an opportunity to create discourse in this area. It argues that future research examining the effectiveness of innovative ICTs must take the eConsent process into account.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Implementing Electric Consent Aimed at People Living with Dementia and Their Caregivers: Did We Forget Those Who Forget?

O’Connor

Twohig²,

O’Brien³

2021

Proceedings of the Annual Hawaii International Conference on System Sciences

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“…Some of the trackers might be experienced as stigmatizing [57,63]. The issue of surveillance and privacy is challenging when it comes to GPS tracking for users with cognitive impairments [68]. In addition, the users' privacy is affected and even more so if the system also included a geofence function [69,70].…”

Section: Primary Usersmentioning

confidence: 99%

Stakeholders’ Views on Responsible Assessments of Assistive Technologies through an Ethical HTA Matrix

Thorstensen¹

2019

Societies

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Assessments of novel assistive technologies for use in home-based services has been documented to be performed in a variety of ways and often with a rather narrow focus on safety and effect or effectiveness. In order better to understand the place for wider forms of assessments of assistive technologies, the current study presents a combination of the Ethical Matrix and the Socratic approach for assessment of health technologies—the Ethical HTA Matrix. This matrix was filled with content based on a case of a GPS localization system, which was validated by stakeholders. In a next step, central decision-makers in assistive technologies and stakeholders were interviewed concerning their views on this methodology. Mainly, the matrix was seen as very comprehensive, but too detailed with an abundance of information. Nevertheless, some informants suggested concrete uses of the matrix in their organizations. Some understood the matrix more as an epistemic tool aiming at providing an overview of the state of knowledge, while others identified a normative potential in the matrix that could be implemented in health innovation processes for the home-based services, in particular when discussing novel solutions and working methods with health professionals and care workers.

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“…Researchers often highlight the core ethical problem of achieving informed consent with an individual living with dementia [ 14 - 18 ]. They have demonstrated the need for tools to support education, awareness, and decision-making about technologies used to support care [ 16 , 19 - 21 ], including forward-looking consent processes before dementia undermines informed preference formation or expression [ 22 ]. This article reports on a novel self-administered intervention, Let’s Talk Tech, to address this problem, which is modeled on advance care planning interventions.…”

Section: Introductionmentioning

confidence: 99%

“…The dominant risks and challenges that are innate to passive monitoring are in conflicts among privacy, autonomy, freedom, and safety and risk management [ 24 ]. Potential risks include isolation through reduced human interaction and hands-on care, privacy invasion, loss of control, data inaccuracy, and reduced behavioral autonomy [ 14 , 16 , 17 , 22 , 25 - 36 ]. Research indicates that it is not easy for older adults on their own to appreciate what it will be like to be monitored [ 37 ].…”

Section: Introductionmentioning

confidence: 99%

Advance Planning for Technology Use in Dementia Care: Development, Design, and Feasibility of a Novel Self-administered Decision-Making Tool

Berridge¹,

Turner²,

Liu³

et al. 2022

JMIR Aging

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Background Monitoring technologies are used to collect a range of information, such as one’s location out of the home or movement within the home, and transmit that information to caregivers to support aging in place. Their surveilling nature, however, poses ethical dilemmas and can be experienced as intrusive to people living with Alzheimer disease (AD) and AD-related dementias. These challenges are compounded when older adults are not engaged in decision-making about how they are monitored. Dissemination of these technologies is outpacing our understanding of how to communicate their functions, risks, and benefits to families and older adults. To date, there are no tools to help families understand the functions of monitoring technologies or guide them in balancing their perceived need for ongoing surveillance and the older adult’s dignity and wishes. Objective We designed, developed, and piloted a communication and education tool in the form of a web application called Let’s Talk Tech to support family decision-making about diverse technologies used in dementia home care. The knowledge base about how to design online interventions for people living with mild dementia is still in development, and dyadic interventions used in dementia care remain rare. We describe the intervention’s motivation and development process, and the feasibility of using this self-administered web application intervention in a pilot sample of people living with mild AD and their family care partners. Methods We surveyed 29 mild AD dementia care dyads living together before and after they completed the web application intervention and interviewed each dyad about their experiences with it. We report postintervention measures of feasibility (recruitment, enrollment, and retention) and acceptability (satisfaction, quality, and usability). Descriptive statistics were calculated for survey items, and thematic analysis was used with interview transcripts to illuminate participants’ experiences and recommendations to improve the intervention. Results The study enrolled 33 people living with AD and their care partners, and 29 (88%) dyads completed the study (all but one were spousal dyads). Participants were asked to complete 4 technology modules, and all completed them. The majority of participants rated the tool as having the right length (>90%), having the right amount of information (>84%), being very clearly worded (>74%), and presenting information in a balanced way (>90%). Most felt the tool was easy to use and helpful, and would likely recommend it to others. Conclusions This study demonstrated that our intervention to educate and facilitate conversation and documentation of preferences is preliminarily feasible and acceptable to mild AD care dyads. Effectively involving older adults in these decisions and informing care partners of their preferences could enable families to avoid conflicts or risks associated with uninformed or disempowered use and to personalize use so both members of the dyad can experience benefits.

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Privacy and Future Consent in Smart Homes as Assisted Living Technologies

Cited by 11 publications

References 54 publications

Implementing Electric Consent Aimed at People Living with Dementia and Their Caregivers: Did We Forget Those Who Forget?

Implementing Electric Consent Aimed at People Living with Dementia and Their Caregivers: Did We Forget Those Who Forget?

Stakeholders’ Views on Responsible Assessments of Assistive Technologies through an Ethical HTA Matrix

Advance Planning for Technology Use in Dementia Care: Development, Design, and Feasibility of a Novel Self-administered Decision-Making Tool

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