Description
This paper use 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. It is also now recognised that family privacy plays an important role in protecting families from societal and corporate intrusion and can further 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 which confirm that a range of telehealth and telemedicine technologies are now being use by the National Health Service to support children's health care. Highlighting that patients and their parents are often not told how these technologies use patient data, this paper raises important questions about whether parents and children should be expected to engage with healthcare technologies which they may not understand or trust, and which parents may not perceive to be in their children’s best interests. It 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 not just for children’s health but also for their privacy.
| Period | 1 Nov 2024 |
|---|---|
| Event title | Association of Internet Researchers Annual Conference 2024: Industry |
| Event type | Conference |
| Location | Sheffield, United KingdomShow on map |
| Degree of Recognition | International |