Corpora of Disordered Speech in the Light of the GDPR: Two Use Cases from the DELAD Initiative

Proceedings of the 12th Conference on Language Resources and Evaluation (LREC 2020), pages 3317–3321 Marseille, 11–16 May 2020 c⃝ European Language Resources Association (ELRA), licensed under CC-BY-NC 3317 Corpora of Disordered Speech in the Light of the GDPR: Two Use Cases from the DELAD Initiative Henk van den Heuvel1, Aleksei Kelli2, Katarzyna Klessa3, Satu Salaasti4 1CLS / CLST, Radboud University, Nijmegen, the Netherlands; 2School of Law, University of Tartu, Estonia; 3Inst. of Applied Linguistics, Adam Mickiewicz University in Poznan, Poland 4Department of Psychology and Logopedics, University of Helsinki, Finland h.vandenheuvel@let.ru.nl, aleksei.kelli@ut.ee, klessa@amu.edu.pl, satu.saalasti@helsinki.fi Abstract Corpora of disordered speech (CDS) are costly to collect and difficult to share due to personal data protection and intellectual property (IP) issues. In this contribution we discuss the legal grounds for processing CDS in the light of the GDPR, and illustrate these with two use cases from the DELAD context. One use case deals with clinical datasets and another with legacy data from Polish hearing-impaired children. For both cases, processing based on consent and on public interest are taken into consideration. Keywords: personal data, special categories of personal data, GDPR, language and speech disorders 1. DELAD and Corpora of Disordered Speech Corpora of disordered speech (CDS) are hard to obtain. They are costly to collect and difficult to share due to personal data protection and intellectual property1 (IP) issues. Moreover, they are often small in size and very dedicated in terms of language impairments addressed. These factors make re-use a challenge on the one hand, and a necessity on the other. A strong need is felt by the research community to bring together existing and new CDS in an interoperable and consistent way that is both legal and ethically safeguarded. The CLARIN infrastructure is regarded as indispensable for this purpose. The CHILDES Talkbank, CMU also being a CLARIN Centre, is an important asset of this infrastructure following US legislation. CDS can be federatively archived at local CLARIN centres whereas they can be made findable through a central portal via their (harvested) metadata. DELAD2 (=SHARED in Swedish) is an initiative to establish a digital archive of disordered speech and share this with interested researchers within CLARIN. DELAD has organised four workshops over the years 2015-2019, the latter two of which were held under the umbrella of CLARIN ERIC. Topics addressed in these workshops were: Guidelines for collecting and sharing CDS (in the light of the GDPR3), levels of anonymisation, layered access, integration of CDS in the CLARIN infrastructure, formats, and relevant metadata. The DELAD community consist of researchers involved in collecting and analysing CDS, research data and infrastructure specialists, and legal experts. DELAD has chosen the CLARIN infrastructure as primary space for storing and sharing 1 Due to the focus of this paper IP issues are not addressed here. However, they might have significant impact on the use and dissemination of research data. 2 http://delad.net 3 EU General Data Protection Regulation, https://gdpr-info.eu/ CDS. More specifically, DELAD has linked up with CLARIN’s Knowledge Centre for Atypical Communication …

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