User-Led Modification of Standard Medical Care for Children: An Analysis of Parents' and Healthcare Professionals' Legal Duties of Care

Increasingly, parents choose experimental treatment or modify existing treatment for their children where current therapies are ineffective or where the alternative seems to produce better health outcomes. The lack of knowledge of potential risks and benefits of non-standard treatment gives rise to concerns about the legal liability of healthcare professionals who support its use. This paper addresses the legal and ethical responsibilities of healthcare professionals and parents in respect of modified standard treatment in the healthcare of children. It analyses these duties using the example of user-led technology in children with type 1 diabetes where open source software links a continuous glucose monitor and insulin pump — a DIY looping system. A research study carried out by an interdisciplinary team at the University of Melbourne has identified that parents are using DIY systems in preference to a commercial, regulated looping system which is available in Australia, and they report better management of their child’s condition. This paper considers the parameters of ethically appropriate support by clinicians of use of a DIY system, which is a modification of standard treatment, and their potential legal liability in tort.