A review has been shared in JMIR Publications entitled ‘Technical, ethical, legal, and societal challenges with digital twin systems for the management of chronic diseases in children and young people”.
Authors David Drummond and Adrien Coulet begin by providing some background context, defining a digital twin as “using the internet of things (IoT)” to obtain “a comprehensive representation of the patient’s health status in real time”.
Here, we explore the challenges of digital twin systems for managing disease in children and young people (CYP), as presented in the review.
Technical challenges include:
- Lower rates of smartphone ownership in CYP complicate the use of digital health interventions for remote management of children’s diseases.
- The growth and development of CYP is challenging as manufacturers are required to make devices in different model sizes, with appropriate interfaces and physiological parameters for CYP of different ages.
- Devices intended to collect data from children’s bodies must take into account the additional risks they may pose to children, such as choking on small parts that may come off the object or exposure to chemicals.
- Children may also pose risks to the objects; with connected objects more likely to be lost or broken when used with CYP than with adults.
- Creating models with traditional supervised approaches from real-world data is difficult with CYP, as the amount of available data is lower; this is due to the fact that there is less historical data given their young age, the logistical and legal difficulties in obtaining the data, and the lower prevalence of diseases in children. In addition, the diversity of the pediatric population means that smaller datasets are used, which makes it more difficult to obtain a performant model for CYP.
Ethical challenges include:
- The principle of autonomy cannot be applied in the usual sense to children as they are inherently dependent on adults; it is proposed instead to protect the development of the child’s autonomy. Pediatricians should encourage this development by encouraging children to describe symptoms themselves and supporting them to take responsibility in their own care.
- Beneficence, referring to the responsibility of professionals to promote wellbeing of their patients, means that digital twin systems must be evaluated for efficacy and safety through appropriate clinical studies. It should be noted that digital twin systems can also pose threats to CYP’s development; for example, they may prevent CYP from playing or taking part in certain sports, they may experience pressure and stress due to continuous monitoring, and they may impair the social life of CYP due to feeling different for wearing their device or through not being able to be left alone with people who do not understand how the device works.
- The principle of justice, referring to the delivery of equal treatment and care according to an individual’s needs as well as just allocation of available resources, is very important here. The review notes how “poor child health limits the potential and development of children, leading to reduced health and life chances in adulthood” and adds that the main risk of digital twin systems lies in exacerbating inequalities. Disadvantaged families may not be able to afford the device, excluding children, and families with low levels of digital literacy may find it more difficult to use the device, resulting in less effective treatment adaptations. The third risk is around self-exclusion for disadvantaged families; “several studies found that lower levels of education, lower levels of employment, and lower household income are associated with negative views and reluctance to participate in research programmes involving AI”.
Legal challenges include:
- There is a need to provide CYP with special protection from digital twin system risks, as they have special characteristics that expose them to greater or potentially different risks in comparison to adults. Approval for drugs for children are subject to a specific process in the United States and European Union, but digital twin systems are not subject to this regulation.
- Legislators must protect children from the risks of not having access to digital twin systems that could improve their health. “Industry has consistently been less interested in developing drugs for children because of the small number of children affected, increased regulatory constraints, and difficulty of conducting clinical trials in this population,” the review states. This trend is said to continue with medical devices such as digital twin systems.
Societal challenges include:
- There is a risk of dehumanisation if most medical decisions were to be made autonomously and remotely by digital twin systems, which could risk a loss of meaning in practice and burnout.
- Using digital twin systems could contribute to “growing distrust” of pediatricians, as digitalisation is already said to have increased parents’ distrust “whether through access to medical information on the internet or conspiracy groups on social networks”.
- There is a need to prevent children from growing up in a “surveillance society”. Constant monitoring of children to ensure safety is a general trend in the same way that surveillance cameras are intended to ensure the safety of the population, but parents could demand to monitor children at all times for safety purposes since data is already available and being collected for health purposes. Children could grow up in an optimised state of physical health but with increased levels of anxiety and dependence.
- “Among the sectors responsible for greenhouse gas emissions, the digital sector is growing in importance every year,” the review notes. Medical devices require raw materials such as rare metals and most are single-use; in addition, the flow and storage of data generated by these devices in data centres contributes to global warning and CO2 emissions.
The authors conclude that using digital twin systems for children can pose specific challenges at individual and societal levels.
They state that “the ethical approach that seems most appropriate when developing and evaluating a digital twin system is that of value pluralism. “This approach recognises many different, equally fundamental moral values, which may conflict with each other without a predominant value. Indeed, improving children’s health is as important as ensuring their quality of life and future development, promoting a society in which they can flourish and leaving them with a livable planet. To take into account all these dimensions, the development of digital twin systems needs to involve many stakeholders at all stages, from the development phase to the evaluation phase.”
In addition, evaluation of pediatric devices must balance the expected effects on the child’s health and its beneficial consequences against the risks posed by the device, with the evaluation to be supported by specific legislation.
To read the review in full, please click here.
The credits for the review are as follows: Drummond D, Coulet A, Technical, Ethical, Legal, and Societal Challenges With Digital Twin Systems for the Management of Chronic Diseases in Children and Young People, J Med Internet Res 2022;24(10):e39698, doi: 10.2196/39698PMID: 36315239
