Data Protection and Special Needs

Data protection for vulnerable groups

Topic: human rights
Focus: data protection; society
Method: Co-researchers

Duration: July 2023 - December 2023
Status: completed
Location: Upper Austria
Funding: PPIE Exploration

What is the project about?

The project addresses the challenges of handling personal data relating to people with cognitive impairments, such as individuals with Down syndrome (Trisomy 21). Legal scholars and social scientists work closely with citizen scientists—including adult legal representatives, support persons, and family members of people with cognitive impairments—to investigate the legal, ethical, and practical challenges associated with processing personal data. Together, they develop approaches and recommendations for ensuring that personal data are handled in a legally compliant, secure, and responsible manner.

What is the goal of the project?

The project aims to understand how data protection challenges are perceived and addressed in practice by those directly involved, and to identify opportunities for handling the personal data of people with cognitive impairments in a legally compliant manner.

The project creates value for all participants. Legal scholars and social scientists gain insights into the experiences, perspectives, and decision-making practices of those who work with the personal data of people with cognitive impairments, such as adult legal representatives, support persons, and family members. At the same time, these citizen scientists can actively contribute their needs, experiences, and perspectives to the research process, helping to shape practical and legally sound solutions. Their involvement also raises awareness of data protection principles and strengthens their understanding of data protection rights and responsibilities.

Who participates in the project?

Family members of people with cognitive impairments; support persons; adult legal representatives

How are participants involved in the project?

Citizen scientists are involved in the research through exploratory expert interviews and a collaborative research workshop. These activities enable them to contribute both to shaping the research agenda and to co-designing practical solutions that reflect their needs, experiences, and perspectives.