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Good enough? Parental decisions to use DIY looping technology to manage type 1 diabetes in children

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Abstract

People are using innovative internet of things technologies to gain individualised management of their type 1 diabetes. The #WeAreNotWaiting movement supports them to build their own hybrid closed loop systems and access their real time blood sugar data via any web connected device. A small number of parents in Australia use such DIY looping systems to manage their child’s type 1 diabetes, but these systems have not been approved by the Therapeutic Goods Administration in Australia, creating ethical dilemmas for clinicians about how to respond to the use of medical devices that are not registered on the Australian Register of Therapeutic Goods. This article considers whether the use of DIY looping is in the best interests of the child and, if not, whether intervention in parental decision making is justified to prevent harm to the child. It addresses the ongoing duty of healthcare professionals to provide care to children who are ‘looping.’ Reference is made to findings from a study, Personalised Closed Loop Systems for Childhood Diabetes, to illustrate stakeholders’ perceptions of benefits and harms of DIY looping systems. I conclude that the decision of parents to use DIY looping technology could be considered to be in a child’s best interests, broadly defined, and falls within the Zone of Parental Discretion, however healthcare practitioners who support parents may have professional concerns in doing so.

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Notes

  1. https://openaps.org/ accessed 30.6.2021.

  2. A survey in 2017 found twenty individuals in Australia were actively looping, of those two were teenagers and one was under 10 years of age. Hng and Burren (2018).

  3. Data from Australian Institute of Health and Welfare, updated 3 Apr 2020, https://www.aihw.gov.au/reports/children-youth/australias-children/contents/health/children-diabetes, accessed 30 June 2021.

  4. Section 41BD of the Therapeutic Goods Act 1989 Act defines a ‘medical device’ as an instrument, apparatus, appliance, including the software necessary for its proper application, used for monitoring, treatment or alleviation of a disease.

  5. https://law.unimelb.edu.au/helex/research/research-projects/regulation-of-personalised-digital-hybrid-closed-loop-systems-to-manage-diabetes-in-children.

  6. Family Law Act 1975 (Cth) and state and territory legislation, for example the Children, Youth and Families Act 2005 (Vic).

  7. Director Clinical Services, Child &Adolescent Health Services and Kiszko & Anor [2016] FCWA 75 [53].

  8. This is notable in court decisions in England & Wales, for example NHS Trust v MB [2006] EWHC 507 (Fam).

  9. Evans & Anor v Alder Hey Children’s NHS Foundation Trust& Anor, Baroness Hale [14].

  10. For example, NHS Trust v SR [2012] EWHC 3842, King's College Hospital NHS Foundation Trust v Hasstrup (Withdrawal of Treatment) [2018] EWHC 127 (Fam).

  11. Wyatt v Portsmouth Hospital NHS Trust [2005] EWCA Civ 1181, Wall L.J. [87].

  12. Director Clinical Services, Child &Adolescent Health Services and Kiszko & Anor [2016] FCWA 19 Thackray CJ. [30].

  13. Director Clinical Services, Child &Adolescent Health Services and Kiszko & Anor [2016] FCWA 75 O’Brien J. [72]

  14. In the Matter of Charlie Gard [2017] EWCA Civ 410 Lord Justice McFarlane [80].

  15. Director Clinical Services, Child &Adolescent Health Services and Kiszko & Anor [2016] FCWA 75 O’Brien J.[78]

  16. This could describe for example a second wave of parents who, on being aware of DIY looping from the diabetes community, set up and manage the system with insufficient knowledge, preparation or backup.

  17. Yates & Anor v Great Ormond Street Hospital for Children NHS Foundation Trust & Anor (Rev 1) [2017] EWCA Civ 410 [54].

  18. Portsmouth NHS Trust v. Wyatt [2005] EWHC 2293, [40].

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Acknowledgements

Networked Society Institute, University of Melbourne for the seed funding for the Personalised Closed Loop Systems for Childhood Diabetes and to members of the project team.

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  1. University of Tasmania, Hobart, TAS, Australia

    Carolyn Johnston

  2. Melbourne Law School, The University of Melbourne, 185 Pelham Street, Carlton, VIC, 3010, Australia

    Carolyn Johnston

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Johnston, C. Good enough? Parental decisions to use DIY looping technology to manage type 1 diabetes in children. Monash Bioeth. Rev. 39 (Suppl 1), 26–41 (2021). https://doi.org/10.1007/s40592-021-00133-5

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