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Developing a System for Processing Health Data of Children Using Digitalized Toys: Ethical and Privacy Concerns for the Internet of Things Paradigm

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Abstract

EDUCERE (Ubiquitous Detection Ecosystem to Care and Early Stimulation for Children with Developmental Disorders) is a government funded research and development project. EDUCERE objectives are to investigate, develop, and evaluate innovative solutions for society to detect changes in psychomotor development through the natural interaction of children with toys and everyday objects, and perform stimulation and early attention activities in real environments such as home and school. In the EDUCERE project, an ethical impact assessment is carried out linked to a minors’ data protection rights. Using a specific methodology, the project has achieved some promising results. These include use of a prototype of smart toys to detect development difficulties in children. In addition, privacy protection measures which take into account the security concerns of health data, have been proposed and applied. This latter security framework could be useful in other Internet of Things related projects. It consists of legal and technical measures. Special attention has been placed in the transformation of bulk data such as acceleration and jitter of toys into health data when patterns of atypical development are found. The article describes the different security profiles in which users are classified.

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Notes

  1. The team members and collaborators come from the Technical University of Madrid (Universidad Politécnica de Madrid), Autonomous University of Madrid (Universidad Autónoma de Madrid), University of Alcalá (Universidad de Alcalá), Cardenal Cisneros University Center (Centro Universitario Cardenal Cisneros), and the State Reference Center for Individual Autonomy and Technical Support [Centro de Referencia Estatal de Autonomía Personal y Ayudas Técnicas, (CEAPAT)].

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Acknowledgements

This article is part of a wider research conducted under the EDUCERE project framework (Ubiquitous Detection Ecosystem to Care and Early Stimulation for Children with Developmental Disorders;TIN2013-47803-C2-1-R), supported by the Ministry of Education and Science of Spain through the National Plan for R + D + I (research, development, and innovation). The authors wish to thank Dr. R. Corripio-Gil, for her useful comments on an earlier draft.

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Authors and Affiliations

  1. Grupo de Investigación Tecnologías para la Sociedad de la Información y el Conocimiento (T>SIC). Campus Sur, Universidad Politécnica de Madrid. Ctra. de Valencia Km. 7, 28031, Madrid, Spain

    María Luisa Martín-Ruíz, Celia Fernández-Aller, Eloy Portillo & Javier Malagón

  2. Research Group INEXE: Inclusión y exclusión educativa [Inclusion and Exclusion in Education], Universidad Autónoma de Madrid, Cantoblanco. C/ Iván Pavlov 6, 28049, Madrid, Spain

    Cristina del Barrio

Authors
  1. María Luisa Martín-Ruíz
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  2. Celia Fernández-Aller
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  3. Eloy Portillo
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  4. Javier Malagón
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  5. Cristina del Barrio
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Corresponding author

Correspondence to María Luisa Martín-Ruíz.

Appendices

Appendix 1

Letter addressed to parents or legal tutors of children attending one of the early education schools (0–3 year’s old children), introducing the project and asking for their consent for their children’s participation.

figure a

Dear parents/tutors:

We form a team of engineers, psychologists, and physiotherapists from the Universidad Politécnica de Madrid (UPM), Universidad Autónoma de Madrid (UAM) and Universidad de Alcalá (UAH), who are developing the project EDUCERE [(Ecosistema de Detección Ubicua, atenCión y Estimulación tempRana para niños con trastornos del dEsarrollo) Ecosystem for the Ubiquitous Detection, AtenTion and Early Estimulation of children with developmental difficulties], coordinated by Miguel Ángel Valero (UPM). The Project involves several early education schools in Madrid city and surrounding towns, and aims at exploring various aspects of early development through the child’s natural interaction with people and with toys and other daily objects. More specifically, the possibilities of a set of digitalized toys to give information of children’s actions will be explored. The toys are equipped with the necessary technology to record diverse elements of children’s actions. The final aim is to detect possible difficulties otherwise unobservable, in order to promote early stimulation and intervention to prevent from more severe difficulties later in children’s lifes.

The project started in autumn 2014. In this first study children aged 20–30 months, will take part in an object-manipulation task, lasting 15 min. as average, interviewed in a ludic framework by researchers with experience in interviewing and interacting with children. The interview will take place during school time, in the moment decided by the school in order not to disrupt the normal schedule of activities, rest and meals.

Approaching the end of the academic year, the school will have the results, and the team can present them in a joint or individual session to those families interested in knowing their children’s data.

According the Data Protection Rules, and the Commissions for Ethics in Research of the corresponding universities taking part in the Project, you can find attached a document of parental consent. Please return it with your signature in case you agree on your child’s participation. The document is supervised by a Ph.D. in Law, lecturing at UPM who is an expert in data protection.

Moreover, aiming exclusively at analysing their task performance, children might be videotaped manipulating the toys. In these videos, children’s faces will not be. This material would only be used for didactic purposes in the context of scientific divulgation. The participants’ names will be kept anonymous. Nevertheless your explicit consent is also required, therefore we ask you again to sign your agreement on this.

At the school principal’s office, you will find a document with a more detailed description of the Project, at the disposal of any parent wishing information in depth. Please contact us in case you would like further clarification, or you have any doubt. You find below our telephone numbers and email addresses.

Kind regards.

  • Cristina del Barrio, 91 497 5212, cristina.delbarrio@uam.es

  • Kevin van der Meulen, 91 497 2384, kevin.vandermeulen@uam.es

    Departamento de Psicología Evolutiva y de la Educación, Grupo de investigación INEXE (Inclusión-exclusión educativa) [Dept. of Developmental & Educational Psychology, Research Group INEX (Inclusion–exclusion in educational settings)]

  • José Eugenio Ortega, 91 497 4597, eugenio.ortega@uam.es

    Dpto. de Psicología Clínica y de la Salud [Dept. Of Clinical & Health Psychology]

  • Ángeles Gutiérrez, 91 497 6603, nines.gutierrez@uam.es

    Dpto. Didáctica y Teoría de la Educación [Dept. o Didactics & Theory of Education]

UNIVERSIDAD AUTÓNOMA DE MADRID

Appendix 2

Document of Informed Parental Consent

figure b

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Martín-Ruíz, M.L., Fernández-Aller, C., Portillo, E. et al. Developing a System for Processing Health Data of Children Using Digitalized Toys: Ethical and Privacy Concerns for the Internet of Things Paradigm. Sci Eng Ethics 24, 1057–1076 (2018). https://doi.org/10.1007/s11948-017-9951-x

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