The University of Salento is the AINCP partner with the expertise we need to advise and manage the ethical aspects of the project. In this interview, we asked Corrado Claverini and Chiara Montalti, postdoctoral researchers, about the ethical team work and the questions that matter most to parents and children.

Can you tell us why Ethics is relevant to the AINCP project?

C. Montalti: AINCP is a highly innovative project for us because it involves ethical analyses from the very beginning. Since AINCP is a project that engages different partners, disciplines, and interests, Ethics should represent a fruitful way to navigate this heterogeneity, helping to raise questions of interest to everyone, and challenging what may appear as neutral or self-evident. Ethics, besides addressing its own status and foundations, should aim to apply its tools and analyses in different fields concerning human and non-human dimensions, therefore being trans-disciplinary (1).

Ethics is crucial in projects on AI and healthcare due to the potential impact and implications these technologies can have on the individuals involved and on society at large. For example, it is necessary to

• guarantee the well-being of the volunteers involved in the project,

• that the technologies implemented do not perpetuate biases or discriminations and are trustworthy,

• that sensitive data of the patients are protected,

• that the clinical and technological solutions reached throughout the project can be sustainable within different national health services.

Those aspects are also particularly important within a project that involves children.

How will you conduct your work?

C. Claverini: In general, the methodology of AINCP is based on an approach called “citizen science”, which means, in our case, that parents and children will be involved as agents participating in the peer production of knowledge, not only as mere providers of data. As a result, by integrating their practical knowledge into the design, development and implementation of research itself, the impact of the new technological solutions on society will be significant.

We are examining the relevant scientific literature on Ethics. We are focussing on all the aspects just mentioned. Then, we will also ground our analyses on questionnaires and participants observation of the different parts involved in the project. Therefore, our methodology is hybrid, including what is called “desk research” – namely, the exploration of data and analyses gathered from existing research –, and what is called “empirical research” – which means, the collection of data and evidence through direct observation and experience.

Can you discuss some of the ethical issues dealing with the use of AI?

C. Montalti: We are aware that sometimes AI systems appear to be non-transparent, especially for whoever is not working in the field: it can be difficult to understand how they work and to justify their outputs.

Patients and their families can therefore feel excluded in treatments and clinical trials that deploy AI. In our project, we consider it a priority to provide adequate information about the technology used and to guarantee exchanges with the family as long as the study proceeds. The introduction of AI could generate a form of extraneity and distance in the relationship between clinicians and families, and we, therefore, aim to maintain trustworthiness and clarity. Children, as well, will be equipped to understand how AI is designed and how it works.

And what about the involvement of children?

C. Claverini: This is another important aspect we are highlighting in our analyses, it concerns specifically the children involved. Children are not only the beneficiaries/end-users of ethical-oriented practices and theories, but they also concur in co-creating ethical knowledge and ethical research.

Considering specifically healthcare and technological domains, their participation – in our case, of children with Unilateral Cerebral Palsy and their families – is urgent, because they are equipped with specific practical knowledge and expectations, which may differ from the values and views shared by people without disabilities, who represent the majority in clinical, technological and scientific research in disability. It is also important to address the individual needs and expectations of children with UCP (and their families) rather than relying on a standard to be achieved.

In general, therefore, an important aspect of our work is to ensure that children’s freedom, autonomy, and pursuit of happiness are preserved throughout the project, and they can actively participate and be safeguarded.

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(1) The aim of Ethics, especially what is called ‘applied ethics’, is to consider different factors, explore their weight and value, and assess possible choices that can be illustrated as justifiable and fair. In this sense, Ethics can be considered affine to Law, but it rather differs from it, as it can challenge or vice versa confirm existing norms, values, and principles (legal, but also moral ones) – therefore proposing alternatives.