Less is more when FAIR. The minimum level of description in pathological oral and written data
The complexities of curating and disseminating speech archives of vulnerable individuals, balancing access rights with privacy concerns. Addressing ethical, legal, and technical challenges in preserving sensitive data and historical records
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Less is more when FAIR. The minimum level of description in pathological oral and written data Rosalba Nodari, Silvia Calamai, Henk van den Heuvel CLARIN Annual Conference, 27 - 29 September 2021
Questions How to define a protocol for the curation and dissemination of speech archives of vulnerable people, which appear to have de jure the highest restrictions on curation and dissemination How to find a balance between the rights of the recorded people (and their heirs) and the right of access to information and preservation of memory Problems with permissions and technical challenges
Database Enterprise for Language And speech Disorders http://delad.net Guidance for sharing corpora of speech of individuals with communication disorders (CSD) Support from GDPR issues to safe repositories in the CLARIN infrastructure CLARIN data centers (The Language Archive, Talkbank)
Arezzo Neuropsychiatric Archive 1500 elements, (files, registers, envelopes, notebooks and filing cabinets, etc.) Written and spoken documents of unmonitored speech; Anna Maria Bruzzone s speech archive (audio records and transcriptions for the book Ci chiamavano matti. Storie da un ospedale psichiatrico, Torino, Einaudi, 1979); Medical records of patients admitted to the mental and neurological wards; Diary of a mental health patient.
Personal diary of a patient with schizophrenia P.A.: born in 1916, unmarried, with only basic literacy. Hospitalized twice, later in life he admits himself voluntarily to the hospital, under the direction of Pirella. Personal diary of 323 pages. The diary is currently being transcribed.
Metadata of vulnerable speech archives: some issues 1. Heterogeneity of the archive: granularity and modularity Set of metadata that can be suitable for different resources at the same time 2. Metadata profile for restricted access corpora No sensitive data (i. e. medical diagnoses) Hybrid nature of the archive with different levels of description depending on specific bundles and subcollections 3. Uncertainty of historical archives Incomplete information
Conclusion Feasibility study for depositing the linguistic material from the Arezzo ONP archive into the Language Archive Good balance between GDPR issues and essential information suitable for other researchers Data protection, transparency, and accessibility
Thank you! Rosalba Nodari, Silvia Calamai, Henk van den Heuvel rosalba.nodari@unisi.it silvia.calamai@unisi.it H.vandenHeuvel@let.ru.nl
