Position paper on ethical, legal and

social challenges linked to audio- and

video-based AAL solutions

Alin Ake-Kob; Slavisa Aleksic; Zoltán Alexin; Aurelija Blaževičienė; Anto Čartolovni;
Liane Colonna; Carina Dantas; Anton Fedosov; Eduard Fosch-Villaronga;
Francisco Flórez-Revuelta; Zhicheng He; Aleksandar Jevremović; Andrzej Klimczuk; Maksymilian
Kuźmicz; Lambros Lambrinos; Christoph Lutz; Anamaria Malešević;
Renata Mekovec; Cristina Miguel; Tamar Mujirishvili; Zada Pajalic; Rodrigo Perez Vega; Barbara
Pierscionek; Siddharth Ravi; Pika Sarf; Agusti Solanas; Aurelia Tamò-Larrieux1

This publication is based upon work from COST Action GoodBrother – Network on Privacy-Aware Audio- and Video-
Based Applications for Active and Assisted Living, supported by COST (European Cooperation in Science and
Technology).

COST (European Cooperation in Science and Technology) is a funding agency for research and innovation networks.
Our Actions help connect research initiatives across Europe and enable scientists to grow their ideas by sharing them
with their peers. This boosts their research, career and innovation.

www.cost.eu

1More information about the authors is available on the GoodBrother (COST Action 19121) website: https://goodbrother.eu.
Introduction
Active Assisted Living (AAL) technologies aim at improving the health, quality of life and well-being of older people
and people living with frailty. AAL systems use various sensors to monitor an environment and its inhabitants and
gather information to describe events, persons, objects, actions and interactions. Recent advances have given AAL
devices the ability to 'see' and 'hear through the use of cameras and microphones that are integrated into the
devices'. However, their use can be seen as intrusive by some end-users, such as assisted persons and professional
and informal caregivers.

2
In this position paper, we have used Alan Cooper’s persona technique to illustrate the utility of audio- and video-
based AAL technologies. Therefore, two primary examples of potential audio- and video-based AAL users, Anna
and Irakli, serve as reference points for describing salient ethical, legal and social challenges related to use of AAL.

These challenges are presented on three levels: INDIVIDUAL, SOCIETAL, and REGULATORY. For each
challenge, a set of policy recommendations is suggested.

Anna Irakli
Older adult Care facility manager

77 years old, retired. 40 years old.

Living alone (widow) in an Professional caregiver
urban area of Poland. and manager of a
Using an analogue mobile care home for 50
phone. people.
Has a history of falls, He uses a smartphone,
which usually happen in tablet, and laptop.
the bathroom at night.

Her son, Piotr, who lives in a different part of the same One of the main problems that Irakli faces in his facility is
city, has decided to provide her with a video monitoring managing falls among residents. Irakli has been
technology that sends him and her healthcare provider an investigating possible solutions and has discovered video-
alarm signal with an image if a fall occurs. Anna is based smart monitoring systems, which can help with fall
concerned about her privacy. She is afraid that the prevention and fall detection. The solution also seems to
camera in the bathroom will allow someone to see her be cheaper than other possible options. However, Irakli
naked. Having a camera at home makes her needs to consider issues arising from the installation of
uncomfortable, as she will feel like she is being watched all cameras from a legal and ethical perspective. He needs to
the time. Moreover, Anna frequently has her friends over understand the perspectives of residents, caregivers and
to visit in her home and fears their reaction to being family members regarding use of cameras. He must
monitored. She fears that they will avoid her and that she comply with the country’s audio and visual information
will grow lonely. processing legislation.

2
A. Cooper, About Face: The Essentials of User Interaction Design. Foster City, California: IDG Books, 1995.

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 INDIVIDUAL LEVEL
1. Autonomy and informed consent
Anna wants to preserve her autonomy and be able to live at home without support, with her
informational privacy intact. To balance these two needs, she must be provided with clear information
regarding the technology which can help her live at home but may impair her informational privacy
to a certain degree. The trade-offs between the two values must be made clear to Anna in order for
her to make an informed decision. Piotr wants to help Anna make the best possible decision based on
her degree of autonomy. This decision should protect maximum beneficence and be based on clear
information about the technology.

In addition to complying with legal requirements, Irakli should provide information to residents or their
relatives if residents have lost autonomy, on how the technology has addressed ethical concerns related
to data and privacy of older people living in the facility. The care workers should be included in this
process.

Policy recommendations:
Healthcare units overseeing management of ethical medical principles, such as autonomy, should produce means of
communication (e.g., short videos or brochures) to reach relatives of older people like Anna, and managers of facilities, like
Irakli. These means need to describe, in accessible terms, the importance of safeguarding the relevant principles when
implementing and using audio- and video-based AAL systems. This can include showing how the technology works, how privacy-
by-design approaches have been incorporated into the technology and how one can stop using the technology.
Governments should provide financial and human resources to healthcare units in order to democratise information. Misuse of
audio- and video-based AAL systems or their counterpart – unfounded scepticism – can be prevented by transparency and
information.

2. Technology-driven isolation or solitude

Anna is afraid that installing the device will cause her friends and relatives to stop visiting her, either
because they feel uncomfortable with it or because it will make it easier for them to monitor her from
a distance. On the other hand, she finds the device useful because she feels reassured knowing
someone can come and help her if she falls.

Irakli is afraid that installation of the device may lead to it replacing routines based on physical
monitoring, which could be appropriate for some residents of the facility, but not for others.

Policy recommendations:
Governments should map the strengths of older citizens to identify how they may wish to keep contributing to their local
communities, to prevent them from being isolated.
Governments should develop strategies to foster intergenerational solidarity by organising activities where citizens of different
ages can interact, such as recreational activities or meetings where they can organise to help each other based on their
respective strengths.
Facilities need to be supported with free training and tools that help managers easily identify and decide what residents may
be benefited from the use of AAL devices.

3. Privacy and consistent monitoring concerns with Active Assisted Living

Help Anna overcome the feeling of surveillance and invasion of privacy.

Assist Anna in dealing with potential changes to her daily routines (e.g., privacy-enhancing
behaviours) and adaptations caused by monitoring.

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 Irakli should protect the privacy of the care facility residents and employees, as much as possible.
Irakli needs to alleviate surveillance concerns among the care facility residents, their family members
and facility employees.

Policy recommendations:
Ensure maximal involvement of facility residents, their family members and facility employees in the technology adoption process.
Educate decision-makers on best practices in privacy protection and appointing a data controller.
Integrate multi-stakeholder perspectives.

4. Digital literacy

Ensure Anna understands how the technology works, the possible options regarding use of the
technology – e.g., not having the camera on in the bathroom – and how the audio-visual data is
stored.

Ensure Irakli understands how the technology works and can explain it to the end-users.

Policy recommendations:
Develop practical guidelines for the end-user and the carer, potentially aided by audio-visual material that is easy to
understand (e.g., instructional videos).
Provide both technical and pedagogical training to caregivers, so they can explain how to use the AAL technology to the end-
users, simply and effectively.
Raise awareness about online privacy implications and regulations.
Implement long-term and regular digital education.

5. Universal design vs value sensitive design

Anna needs a video-based monitoring system designed and adapted to her values.
Anna would prefer the video-based monitoring system to be personalised, as opposed to having a
universal design and features.

Irakli would like to avoid implementing video-based monitoring systems without informing care home
users.
Irakli should not make a value trade-off between healthcare monitoring and surveillance in the
implementation of video-based monitoring systems.

Policy recommendations:
Technology developers need to involve users in the design and implementation of video-based smart monitoring systems.
Public bodies and technology developers need to assess and review the user needs and values concerning design and
implementation of video-based monitoring systems.
Governments and policymakers should require the design and implementation of video-based smart monitoring systems to be
adapted to individual needs.

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 SOCIETAL LEVEL
6. An organisational culture for ethical excellence

Intermediary healthcare providers helping relatives use audio-video AAL devices need to ensure that
their staff are trained regarding ethical use.
Information and communications technology (ICT) companies and organisations lack tools that allow
developers and researchers to acknowledge and understand Anna’s concerns and to find ways to
overcome her fears and challenges by working in multidisciplinary teams.

Provide clear explanations to the healthcare workers in the facility on how each device's development
has tackled ethical concerns related to data and privacy, and how the devices will be ethically
integrated into healthcare routines to avoid clashes.
Social care organisations need clear explanations that allow care providers and managers to
understand and easily describe to users, workers and volunteers how each specific AAL product and
service tackles ethical challenges.

Policy recommendations:
Provide ICT companies and healthcare organisation managers with access to comprehensive guidelines and tools that allow
them to implement ethical excellence processes and procedures adapted to their specific needs (e.g., CEN/TS17834:2022
European Professional Ethics Framework for the ICT Profession). Training should be complemented with communication
materials written in accessible terms.
Governments should consider providing financial support to ensure that additional training hours are compensated as working
hours.
Develop information and communication materials for older adults explaining the ethical challenges considered during
development of digital tools and how they were overcome for adequate and compliant use, to promote trust and citizen
empowerment.

7. Lack of access to equally distributed care

Connectivity requirements for AAL are high but constant connectivity is not guaranteed. Constant
system functionality is critical, and there cannot be any blackouts.
Anna would find it difficult to get support for fixing the system if it malfunctioned.
The system is expensive to install and maintain, placing strain on Anna’s pension and savings.
Increased digitisation of healthcare services leaves older and less tech-savvy citizens behind.

The care home suffers staff shortages and the ICT technologies make it impossible for the system to
be implemented in time.
The responsibility for carrying out a thorough analysis of the system’s capabilities, benefits and risks
is given to an already strained and stressed workforce, so finding time to make sound decisions is a
challenge.

Policy recommendations:
Provide better digital infrastructure (e.g., high-speed broadband internet).
Provide/offer subsidies to at-risk groups for installation of AAL systems.
Ensure low-threshold support, e.g., an easily accessible 24/7 phone line.
Keep non-digital alternatives in addition to digitised healthcare provision.
Make it more attractive to become a caregiver: information and image campaigns in addition to greater job security and
better pay.

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 REGULATORY LEVEL
8. Legal complexity

Anna finds it difficult to understand her rights and navigate the complex legal framework.
Anna is unsure of what obligations providers of AAL have and how she and others can ensure
compliance with these obligations.

Irakli uses AAL, but does not know what rights he and his patients have, nor is it clear to him what
obligations arise for AAL providers and where to go in case of questions relating to the data
processing, the security of the processing, technology malfunctions, liability issues relating to such
malfunctions, etc.

Policy recommendations:
Streamline legal compliance via practical guidelines that break down the rights and obligations of end-users. To this end, legal
technologies that help guide a user through the complex legal framework can be implemented (e.g., simple decision trees that
help determine the applicability of certain legislation and provide the user with recommendations).
Reduce legal jargon and write legislation in clear, logical sentences. Follow and pursue guidelines that are pushing for more
precise legislation, such as initiatives that look into making legislation ‘digitally ready’.
When communicating with the end-user, use visualisations or audio-visual tools to explain rights and obligations.
Raise awareness about the consequences of non-compliance and pinpoint how compliance can be enforced and where to lodge
formal complaints.
Ensure that laws are written so they can be translated into a machine-readable format and can easily be embedded into
system design at the start of development.

Table 1. An overview of the current legal framework related to Active Assisted Living technologies in the
European Union

The Charter of Fundamental Rights of the European Union, General

Privacy and data protection Data Protection Regulation (GDPR), e-Privacy Directive, e-Privacy
Regulation, Fair Information Principles

NIS Directive (and Digital Service Providers Regulation), Cybersecurity

Cybersecurity Act, NIS Directive II, Regulation on the security of Internet-connected
devices, GDPR, Cyber Resilience Act

The Charter of Fundamental Rights of the European Union, Product

Liability Directive, the Machinery Directive, the Radio Equipment
Product safety and liability
Directive, the Toy Safety Directive, the General Product Safety Directive,
Medical Device Regulation

e-Commerce Directive, Digital Service Act, Digital Market Act, Platform

Consumer protection to Business (P2B) Regulation, Directives on Consumer Protection

The Charter of Fundamental Rights of the European Union, the

Intellectual property Information Society Directive, the Directive on Copyright in the Digital
Single Market, and the Software Directive

The Charter of Fundamental Rights of the European Union,

Anti-discrimination Employment Equality Directive, Racial Equality Directive, Gender
Goods and Services Directive

Artificial intelligence Artificial Intelligence Act, Initiative on civil liability and digital age

Data Governance Act, Data Act, Open Data Directive, Free Flow of
Data governance and
Non-Personal Data Regulation, European Health Data Space, Single
information exchange
Digital Gateway, Whistleblowing Directive

Note: The legislation that is not yet in force is described in italics.

Source: own elaboration.
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9. General Data Protection Regulation

Anna is unaware of her rights under the GDPR and does not know how to take back certain control
over data processing.
Anna is not sure how to assess the trade-offs between highly personalised AAL technologies and
more generic ones, in light of the processing of sensitive data.

Irakli is unsure about his obligations under the GDPR and how to assess the sensitivity of the high-
dimensional data he collects.
Irakli finds compliance challenging since many requirements are vague and even conflicting.

Policy recommendations:
Promote public awareness of the GDPR so that individuals understand and invoke their rights. Older and frailer individuals
should be seen as an important target group here.
Provide additional formal guidelines to make interpreting the law easier for developers of AAL technologies and promote
compliance technologies that encode important aspects of the GDPR into products and services.
Provide more research funding to support the development of innovative security and privacy by design solutions to complex
legal issues.
Provide clear guidance on distinguishing between the distinct categories of data – this can be a highly complex task and is
currently the subject of significant legal uncertainty among developers of AAL technologies.
Suggest methodological approaches that are acceptable to regulators so that controllers can understand how to quantify the
risk of re-identification after they opt to anonymise or pseudonymise data.
Increase awareness of the fact that pseudonymisation and anonymisation are not 'one-off exercises' and that appropriate
security measures are required even when data are pseudonymised or anonymised.

10. Data handling, transparency, and consent

Anna is in a vulnerable position in terms of consent. The information provided to her may be hard
to understand, making consent difficult to get.
Aside from being informed about what kind of information is being collected, Anna wants certainty
about what information must be processed. Anna wants an answer on why the data are being
collected and how and by whom they will be used.
Anna is unsure about whether she needs to get the consent of her friends who come over to visit if
she has AAL technologies installed in her room.
Anna is unsure whether she will become a joint controller if she modifies the AAL product and adds
privacy-preserving technology.

Irakli is unsure how to prove that data subjects like Anna have given consent and also wonders how
to structure transparency notices.
Irakli is unsure how much information processing is needed for the functioning of the AAL
technologies.

Policy recommendations:
Promote awareness of the fact that the binary and one-off consent model is not suitable in the AAL context, and encourage
the development of more flexible, customisable, gradual and progressive control systems (e.g., consider engaging with
developers to establish (and validate) new consent tools, such as affirmations of consent through gestures).
Promote the development of technical tools to obfuscate bystanders (e.g., computer vision techniques to obscure a bystander’s
identity when consent has not been provided).
Promote the introduction of short, standardised, user-friendly forms for informational documents and consider engaging with
developers to create icons that accurately and effectively present all the relevant features of products with respect to data
processing.

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 Ensure that the system enables customisations, i.e., different services. If Anna is comfortable sharing more accurate videos of
herself, then the system can infer something about her anxiety and provide her with specific help. If she is not satisfied with a
granular analysis of her image or video data, she can require the pictures to be blurred immediately. Such customised
versioning would enable the system to comply better with the data minimisation principle.
Issue-specific guidance, recommendations or codes of conduct on implementing data minimisation principle in assisted living
contexts are needed, with a list of reasonable personal data categories to collect in such contexts.
Make recommendations on reasonable data retention periods in assisted living contexts.

11. Privacy and security by design

Anna wants to be empowered to exercise her right to self-determination.

Anna wants the most privacy-preserving option to be used as the default and to potentially opt for
more invasive data processing.
A key concern for Anna is the security of her data, especially sensitive data collected during service
provision.

Irakli is unsure about how to implement privacy-by-design into his practice.

Irakli wants to know how to balance various needs (privacy protection vs. security) and how to
conduct a Data Protection Impact Assessment (DPIA) to document the choices.
Irakli has heard about cyberattacks against large databases and is afraid that patient data can be
leaked.
Irakli does not know how to safeguard all of the data under his control from the risks related to
storage and transmission.

Policy recommendations:
Encourage developers and designers to divide each system into a meaningful set of design elements (e.g., user interface (UI)
controls) for reviewing and managing users’ personal data within and beyond the scope of the designed system and to use
3
clear and accessible language for information dissemination, such as privacy nutrition labels to understand potential privacy
risks and consequences.
Make developers consider data protection by design and default techniques at different system levels to achieve data
protection goals in a more concrete and methodologically sound way (see Figure 1).
Encourage developers to introduce methods that remove personal or sensitive information (e.g., faces) at the user-interface
level after an image has been captured, by employing visual obfuscation, data hiding, secure processing, blind vision and
other intervention methods.
Increase awareness about edge computing and local-only storing or processing as mechanisms to keep information processing
as close to the source as possible in the context of AAL technologies.
Provide guidance on the meaning of ‘state-of-the-art’ so that developers of AAL technologies understand which technical
measures will satisfy regulators.
Support the development of information management and security standards in the context of AAL technologies.
Engage in cyber diplomacy to ensure that there is alignment concerning the international information security requirements
for AAL technologies.

3
P.G. Kelley, J. Bresee, L.F. Cranor, R.W. Reeder. A "nutrition label" for privacy. In Proceedings of the 5th Symposium on Usable Privacy and Security (SOUPS '09). Association for 7
Computing Machinery, New York, New York, 2009, Article 4, 1–12.
 Figure 1. Operationalising privacy for Active Assisted Living technologies

Source: : Fosch-Villaronga, E. (2022) Ethical, Legal, and Societal aspects for Active Assisted Living Technologies. WG1 Cost Action 19121 GoodBrother presentation at the Computers Privacy Data Protection
2022 Conference, Brussels, 23–25 May.

12. Artificial Intelligence Act

Anna does not understand what artificial intelligence (AI) is and whether it may affect her well-being.

Irakli is interested to know the benefits of using AAL technologies based on AI.
Irakli must communicate with users like Anna before and during the use of AI solutions, so they are
adequately informed.

Policy recommendations:

Provide basic education on AI so that all citizens can have an understanding of how it functions. Make sure this education is
accessible to older and frailer individuals.
Require rigorous data validation techniques.
Require that AI systems are periodically verified to avoid the unintended introduction of biases.
Require that sensor data are analysed for correctness, completeness and consistency before feeding them into higher-level
algorithms for processing.
Require relevant impact assessments of AI technologies, such as DPIAs, human rights impact assessments, ethical impact
assessments and algorithmic impact assessments, to mitigate potential risks related to AI.
Ensure that new rules regulating AI are fully aligned with existing legal frameworks to avoid inconsistency, fragmentation and
duplication of requirements.

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 13. Medical Device Regulation

Anna is concerned about her physical well-being and the safety of the products used to protect her
health.

Irakli must be trained to fully understand both the Medical Device Regulation and the possible
effects and risks that may arise from the use of medical devices and the data subject’s (Anna)
consent regarding use of her personal information.
Irakli should be capable of advising users professionally and objectively.

Policy recommendations:
Promote awareness that health-monitoring tools used in assisted living contexts may be categorised as medical devices,
depending on their intended use and specifications.
Provide explicit guidance on distinguishing between health-monitoring tools and medical devices so that developers can better
understand their compliance obligations. This distinction determines what rules apply.
Ensure that there is alignment between the regulations on AI and the Medical Device Regulation.

Figure 2. Medical device regulation vs Artificial Intelligence Act

Source: Fosch-Villaronga, E. (2022) Ethical, Legal, and Societal aspects for Active Assisted Living Technologies. WG1 Cost Action 19121 GoodBrother presentation at the
Computers Privacy Data Protection 2022 Conference, Brussels, 23–25 May.

Conclusion
With the primary aim of raising awareness about the potential challenges in AAL design at the individual, societal
and regulatory levels, we have provided a set of policy recommendations that can be used by AAL stakeholders and
decision-makers. These recommendations align with the recognised approaches to technology design, such as value-
sensitive design, ethics by design and privacy and security by design. The aforementioned ideas may steer the
development, implementation, regulation and governance of AAL technologies towards more responsible and
socially acceptable use. The challenges and recommendations in this position paper will be consistently updated,
and we will soon – based on challenges identified herein and in a white paper – provide a set of guidelines for
designers, developers and engineers on managing the ethical, legal and social aspects of AAL technologies.