FAMILY PRIVACY, FAMILY AUTONOMY AND COERCION IN DIGITAL HEALTHCARE

Resumen

This paper uses family privacy theory and the dataveillance literature as lenses through which to explore state use of health technologies in the care of unwell children, and the contribution of such technologies to children’s datafication. Family privacy is an important ideology which informs legal and political understandings of the family, and influences laws governing the family’s relationship with state and society. Respect for family privacy is commonly understood to entail state non-intervention in ordinary family life. Increasingly, however, scholars recognise that family privacy may be more widely understand to entail family autonomy or decision-making and can be understood to afford parental control over how family information, particularly children’s information, is used. This paper draws upon responses to freedom of information requests received from Integrated Care Boards and Trusts across England as well as information on the NHS Transformation Directorate’s website. This research confirms that a range of telehealth technologies are now being used to support children's health care including virtual wards, apps, wearables and other medical devices which monitor patients’ vital signs. Patients and their parents are, however, rarely told by the NHS how these technologies use patient data. This paper uses the UK General Data Protection Regulation as a framework for exploring what transparent, lawful and fair use of children’s data entails in the context of digitised healthcare. It argues that the NHS could do more to support parents and children to understand these technologies and the implications for children’s privacy.