Oral Presentation Australasian Association of Bioethics & Health Law and New Zealand Bioethics Conference

Use of DIY technologies in diabetes management and child welfare (911)

Carolyn Johnston 1 , Chriselle Hickerton 2
  1. University of Melbourne, Melbourne, VIC, Australia
  2. Murdoch Children's Research Institute , MCRI, Melbourne, VIC, Australia

This paper explores the legal and ethical concerns raised where parents use DIY technologies to manage their child’s type 1 diabetes. A DIY system in diabetes management refers to a continuous glucose monitor and insulin pump which are linked using open source software, and insulin is delivered automatically, based on real-time glucose levels. DIY hybrid closed loop systems have not undergone the usual testing and analysis required by therapeutic approval processes and hence cannot be relied upon as being safe within the scope of the Therapeutic Goods Act 1989. There is anecdotal evidence that some people with diabetes in Australia, including some under 18 years old, are using DIY systems. Diabetes Australia issued a position statement stating that if a person with type 1 diabetes (or a parent or family member) chooses to build a DIY system, they must continue to receive support and care from their diabetes healthcare professional and the health system. However, healthcare professionals working in diabetes management may have valid concerns about their legal liability if they treat or support patients using DIY systems. We will report on findings from a qualitative study of paediatric endocrinologists, diabetes educators, medical indemnity insurers, software developers, social workers and parents about their views on risks and benefits of DIY systems.

Our presentation will consider issues of child welfare, the role of parental discretion and whether use of DIY systems could ever raise an issue of child protection.

  1. Johnston C, Gillam L. ‘Legal and Ethical issues arising from the use of emerging technologies in paediatric type1 diabetes’ QUT Law Review (2018) 18 (2) 93 – 110