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Balancing dementia family carers' rights to online supports with the rights of people with dementia to absolute privacy

In its mission to protect the personal data of European Union (EU) citizens, the reach of the General Data Protection Regulation (GDPR) extends into the research activities traditionally supervised and approved by university institutional review and ethics boards. This article discusses how transnational research for an online support intervention for family carers of people with dementia was obstructed by a particularly restrictive interpretation of the 2018 GDPR. Contested issues discussed include privacy, consent, the balance between risks and benefits, and the rights of family carers.

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Key Information

Type of Reference
Jour
Type of Work
Journal article
Publisher
Policy press
ISBN/ISSN
2397-883X
Publication Year
2020
Issue Number
3
Journal Titles
International Journal of Care and Caring
Volume Number
4
Start Page
435
End Page
440