Abstract

Patient self-management of disease is increasingly supported by technologies that can monitor a wide range of behavioural and biomedical parameters. Incorporated into everyday devices such as cell phones and clothes, these technologies become integral to the psychosocial aspects of everyday life. Many technologies are likely to be marketed directly to families with ill members, and families may enlist the support of clinicians in shaping use. Current ethical frameworks are mainly conceptualised from the perspective of caregivers, researchers, developers and regulators in order to ensure the ethics of their own practices. This paper focuses on families as autonomous decision-makers outside the regulated context of healthcare. We discuss some morally relevant issues facing families in their decisions to monitor the health-related behaviours of loved ones. An example – remote parental monitoring of adolescent blood glucose – is presented and discussed through the lens of two contrasting accounts of ethics; one reflecting the predominant focus on health outcomes within the health technology assessment (HTA) framework and the other that attends to the broader sociocultural contexts shaping technologies and their implications. Issues discussed include the focus of assessments, informed consent and child assent, and family co-creation of system characteristics and implications. The parents’ decisions to remotely monitor their child has relational implications that are likely to influence conflict levels and thus also health outcomes. Current efforts to better integrate outcome assessments with social and ethical assessments are particularly relevant for informed decision-making about health monitoring technologies in families