Déclaration des droits de l'IA : Protéger la dignité humaine et l'autodétermination à l'ère de l'intelligence artificielle

3.1 VoxAI account and product data (Product users)
When you create a VoxAI account we collect identifying and contact information that allows the account to function: your name, email address, password (stored as a salted bcrypt hash), preferred language, communication needs, and where you tell us, the underlying neurological condition affecting your speech (for example amyotrophic lateral sclerosis, Parkinson's disease, cerebral palsy, post-stroke dysarthria, or other).

When you record audio in VoxAI for the purpose of building a voice clone or improving the model that supports you, we collect those audio recordings together with associated quality-assurance metadata.

When you use VoxAI to communicate we collect the conversation transcripts you generate within the Product, the response suggestions presented to you, the response you selected or typed, and the context in which the conversation occurred to the extent you choose to share it.
When you use the application we collect usage and technical metrics: device type, operating system, application version, crash reports, response latency, feature-use counts, and similar data needed to keep the service working.

We do not currently take payment through VoxAI. If and when paid plans launch, payment processing will be handled by a payment processor under its own privacy policy, and this policy will be updated.
 

3.2 Voice recordings and clinical data (Research participants)
For research participants who join the CANDOR programme through a clinical site, we process:

• voice recordings made under the CANDOR clinical protocol;

• clinical severity ratings recorded by a qualified clinician, including ALSFRS-R speech scores, GRBAS ratings, intelligibility percentages, and listener effort ratings;

• limited identifying information necessary to administer the study and respect your rights, including your name, date of birth, contact details, carer or next-of-kin contact information where applicable, and a pseudonymous participant code (for example ALS017) that identifies you in the research corpus;

• derived acoustic and phonological features computed from your recordings;

• session metadata including recording dates, the device used, microphone source, signal-to-noise ratio, and quality-assurance grades;

• transcripts of your recordings, including a ground-truth reference (the prompt sentence) and an automatic-speech-recognition transcript;

• voice notes recorded by your clinician describing your speech;

• timestamped consent records, including the type of consent given, the version of the consent form, and any subsequent revocation.

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Voice recordings collected in the clinical research context constitute health data under UK and EU GDPR Article 9, because of the dysarthria clinical context, and sensitive personal data under the LFPDPPP. We process them accordingly. See Section 4 for the lawful basis and Section 9 for security.

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3.3 Information about minors
VoxAI is not directed to children under the age of 13 and we do not knowingly collect personal data from children under 13 through the Product. If you are under 18 and wish to use VoxAI you will be asked to confirm your age and, in some jurisdictions, to provide verifiable parental consent.

In the research programme we occasionally enrol minors whose parents and treating clinicians have determined that participation is in the child's interest. In such cases we obtain explicit written consent from a legal representative, record the child's separate assent, and apply heightened safeguards documented in the relevant study's Data Protection Impact Assessment.
 

3.4 Information we do not collect
We do not collect special category data we have no use for. We do not intentionally collect data revealing racial or ethnic origin, political opinions, religious or philosophical beliefs, trade union membership, genetic data, data concerning sex life or sexual orientation, criminal conviction data, or financial account information. Clinical records may incidentally contain family history references; where this happens, we treat that data with the same protections that apply to other clinical data.