Fundamental rights are often referred when justifying different views or criticizing existing practices. The aim of this article is to show how fundamental rights impact assessment can guide research and development and innovation (RDI) projects that develop welfare solutions for older people.
SHAPES project in a nutshell
The Smart & Healthy Ageing through People Engaging in Supportive Systems (SHAPES) Project intends to build, pilot and deploy a large-scale, EU-standardised open platform. The integration of a broad range of technological, organisational, clinical, educational and societal solutions seeks to facilitate long-term healthy and active ageing and the maintenance of a high-quality standard of life. (https://shapes2020.eu)
The SHAPES solution is informed by EU fundamental rights and different ethical norms, approaches and ethical guidelines to ensure that the SHAPES solution becomes an ethically responsible innovation for its various end-users and service providers. (see separate article Ethical Framework for Digital Services for Older Persons) In this article, we will focus on how EU Fundamental Rights inform and guide the development of the SHAPES solution and co-creation with end-users.
EU Fundamental Rights as cornerstones of SHAPES Ethical Framework
Privacy and data protection (Article 8 of the EU Charter of Fundamental Rights) is perhaps among the most well-known fundamental right protected in the context of digital service development (Etuaro 2022). In addition, many other fundamental rights are relevant to SHAPES, from the right of people to health care to the right of people to assemble and express themselves, for example. It is essential that all activities within SHAPES promote as many rights as possible and do not undermine or violate them.
The EU Charter of Fundamental Rights (EU CFR) was proclaimed in December 2000 and acquired the same legal status as the Treaties in 2009. The Charter aims to “strengthen the protection of fundamental rights in the light of changes in society, social progress and scientific and technological developments” (CFR, 2016 p. 395). It comprises seven titles with 54 Articles: Dignity (Articles 1–5); Freedoms (Articles 6–19); Equality (Articles 20–26); Solidarity (Articles 27–38); Citizens’ Rights (Articles 39–46); and Justice (Articles 47–50).
Dignity is the starting point for all the SHAPES services to be developed, and co-created with end-users, both older persons and caregivers. This title guarantees Human dignity (Art. 1 EU CFR), the Right to life (Art. 2 EU CFR) and the right to the integrity of the person (Art. 3 EU CFR). The initial part of the Charter also prohibits slavery, forced labour, torture, and inhuman or degrading treatment or punishment.
In SHAPES, dignity means that, for example, “depersonalisation” (i.e. a detachment from the person and their mind and bodily specific needs and complete automation of services) is to be avoided when using certain new technologies, such as robots and virtual assistants as part of the service provision. The SHAPES’ aim is to complement human services, not to replace them. Dignity is also related to the language we use when talking about older persons. In addition, as everyone has the right to the physical and mental integrity, in SHAPES, special attention is paid to the free and informed consent related to research activities.
Freedoms play a key role in SHAPES, not only in terms of privacy and data protection (Etuaro 2022).
The Right to liberty and safety (Art. 6 EU CFR) and Respect for private and family life (Art. 7 EU CFR) are very relevant to SHAPES. First, everyone has the right to feel safe and secure within SHAPES activities, and this sense of safety and security will be promoted by the SHAPES solution. We acknowledge that a feeling of security may be threatened when SHAPES researchers and developers meet with older people if special attention is not paid to establishing a safe space. In that connection, special attention will be paid to home visits and to the impact on the living conditions. Furthermore, private and family life should not be affected by participation in SHAPES. Respect for private and family life should be reinforced by SHAPES efforts to ensure a longer stay at one’s own home.
Freedom of thought, conscience and religion (Art. 10 EU CFR) and Freedom of expression and information (Art. 11 EU CFR)will also be promoted by SHAPES, as older persons’ own thoughts are valued and appreciated as part of co-creation and governance. In that regard, information collected by assistants or robots will at no point in time used against the individuals.
With regard to the Freedom of the arts and sciences (Art. 13 EU CFR) and the Right to education (Art. 14 EU CFR), SHAPES aims to increase opportunities to take part in art and science activities and to favour lifelong learning, given that learning applications will be part of the SHAPES digital solution. Furthermore, SHAPES aims to share the benefits of learning as part of the co-creation process with and for the older persons.
The Freedom to choose an occupation and engage in work (Art. 15 EU CFR) and Freedom to conduct a business (Art. 16 EU CFR) are relevant with regards to professional caregivers of older people. In fact, SHAPES open innovation platform also offers work and business possibilities for those caregivers and various types of organizations providing services for older persons.
Title II on Equality prohibits all forms of discrimination on a number of grounds (including, among others, disability, age, and sexual orientation). Alongside non-discrimination provisions, the equality title includes a number of articles that guarantee respectively the rights of children, the rights of the elderly, and support integration of persons with disabilities in society. Furthermore, Art. 22 EU CFR establishes that the EU protects cultural, religious and linguistic diversity.
Those provisions are essential in the production, development and administration of the SHAPES services. Vital is the protection and promotion of the rights of older people ( Art. 25 EU CFR) and their participation in social life, which SHAPES supports not only through co-development and governance, but also through various co-operative services. The provision on integration of persons with disabilities (Art. 26 EU CFR) is also relevant within the SHAPES project. In fact, SHAPES is characterised by a careful planning of digital services and attention to their accessibility. Most notably, SHAPES encompasses proper support processes, and endorses, in all stages of research and development, supported decision-making.
Non-discrimination (Art. 21 EU CFR) and Equality between men and women (Art. 23 EU CFR) inform the way in which the development and deployment of services occurs in SHAPES. Equality and non-discrimination principles are taken into account when deciding what kind of language or user interfaces we use, what kind of applications we offer, or how applications that use artificial intelligence take into account possible biases in their analysis. Design for all-approach is also applied, to make sure that, SHAPES technologies and services are usable by all people, to the greatest extent possible, without adaptation. This approach does not prevent that services/platform are tailored to the needs of older persons.
Finally, the respect for cultural, religious and linguistic diversity (Art. 22 EU CFR) demands that researchers and services providers in SHAPES pay special attention to identities and cultural profiles also when deploying service user interfaces.
The EU CFR title on Solidarity covers an array of rights, including the right Fair and just working conditions (Art. 33 EU CFR), the right to healthcare (Art. 35 EU CFR) and the right to social security and social assistance (Art. 34 EU CFR). Notably, it also encompasses provision mandating the EU to integrate a high level of Environmental protection (Art. 37 EU CFR) in its policies, and a norm requiring the EU to ensure consumer protection (Art. 38 EU CFR).
Solidarity and the rights related to both social services and healthcare are naturally at the core of SHAPES and its digital services, while the right for just and fair working conditions is relevant to caregivers and service providers. SHAPES is based on the evidence that digital services enable new ways of organising service provision. However, these new ways need to embed fair working conditions. In that regard and to facilitate the respect of those rights, care providers are essential end-users and co-creators of their new working environments.
Environmental protection is also key in SHAPES, given that this project strongly promotes digital solutions for health promotion that reduce environmental impact and overall adopts sustainable environmental practices.
Consumer protection falls within the SHAPES Marketplace and is considered also a cornerstone of the research around end-users’ participation in the SHAPES governance.
5. Citizen’s rights
The title on Citizen’s rights covers, among others, the right to good administration (Art. 41 EU CFR), the right to access documents (Art. 42 EU CFR) and Freedom of movement and residence (Art. 45 EU CFR). Those rights are only indirectly relevant to SHAPES. However, we consider that taking part in the governance of services promotes citizens participation and feeds (although admittedly rather indirectly) in the promotion of the right to good administration. In addition, the SHAPES Digital Platform has been designed to support cross-border service provision. In that way, it indirectly promotes the freedom of movement and residence for both older persons and people working with them.
On the whole, the SHAPES project, the digital solutions deployed within it, as well as the overall governance of the services envisaged and developed are informed by EU fundamental rights. Being SHAPES a pan-EU project, it has looked at the EU CFR as a primary catalog of rights. The impact of fundamental rights on the SHAPES solution is essential. As shown in this article, digital services, their development and governance can support a range of fundamental rights. There are also fundamental rights, which involve also the risk of violating the right if the co-creation or the solution is not carefully planned from rights point of view. Therefore we see that a fundamental rights impact assessment is a cornerstone for ethically sustainable solution.