7.1 Ethics in digital environments
Ethics is a branch of philosophy that describes moral principles and values, such as good and fair ways of living and acting in a world shared with others. Ethics guides people when making choices and helps evaluate actions and those of others. It also helps when examining the reasons behind those actions. Ethics does not provide ready-made solutions, but it does provide tools for reflection and consideration.
Ethics in Digital Rehabilitation involves the application of ethical principles to the design, development, evaluation, implementation and provision of Digital Rehabilitation technologies and services. Ignoring the ethical aspects can create unintended risk for clients and lead to reduced effectiveness, non-compliance, and harm, undermining the best intentions of service providers. Ethics is a complex construct that is applied when legislation and regulations allow freedom of decision.
When discussing ethics in Digital Rehabilitation, we may consider the topic in the context of health in general and view the common ethical practices for telemedicine [1]. In this chapter, we will discuss the five key principles of ethics originally presented in the context of telehealth, but carefully considered in the light of rehabilitation. The key principles are autonomy, beneficence, non-maleficence, justice and professional-patient relationships [2]. Note, that when discussing the last principle in this chapter, the term ‘patient’ is replaced by the term ‘client’.
7.1.1. Autonomy
The first principle, autonomy, is the predominant ethical principle which includes for example client’s ability to make choices, have control, and exercise self-determination. When providing health-related services digitally, clients' autonomy can be improved by, for example, increasing their freedom to live an independent life in their own homes, promoting access to education and information, and receiving support at the level and time that are most suitable for the clients. However, the increased autonomy afforded by technology might potentially lead to heightened client isolation if they are left alone at home, relying solely on technological assistance and lacking direct caregiver presence. Prioritizing the consideration of clients' individual needs and desires, including their preferred level of independence, is paramount whenever feasible. Thus, it's important to seek informed consent from clients when making decisions about the delivery of digital services, in other words, to ensure that clients grasp the nature of digitally provided services, including their limitations and potential risks. Where appropriate and possible, the client should have the option to choose between digital and traditional services. Questions about improving autonomy are not easy since they are often taken in complex and changing contexts.
7.1.2. Beneficence
The second principle, beneficence, refers to doing good or acting for the benefit of others. It means taking actions to promote clients’ well-being, and it emphasises that professionals should act in the best interest of the clients and consider their welfare in service planning and delivery. Digital services have the potential to benefit people by providing assurance, increasing confidence in managing their health, reducing dependence on carers, improving access to quality healthcare, and allowing clients to be treated in familiar surroundings. The principle of beneficence can improve clients’ opportunities to act in their own best interest and enable the provision of information that supports their well-being.
7.1.3. Nonmaleficence
The third ethical principle, nonmaleficence, stands for preventing harm. In the context of digital service delivery, there are possibilities such as using the video connection or other follow-up methods to check on the clients on a regular basis to ensure that no harm is occurring in the home environment. The possibility that professionals may choose to deliver remote services rather than services delivered in person in difficult or high needs cases may put clients at risk and impose them on the unwell. The use of digital services might also result in some clients being loaded with more responsibilities, which, on the other hand, might empower others.
7.1.4. Justice
Justice, the fourth ethical principle, stands for fairness concerning equal access to technology, taking into consideration the client's needs, and balancing those with the needs of the wider community. The key advantage of digital services, access to care for marginalised communities, can be unattainable for clients, communities, or localities with fewer financial resources or digital skills. For example, remote areas would most likely need and benefit from digital services; however, those are likely to be least able to afford them, and in some cases, the clients might not have the required skills to use the technology. It is crucial to consider equal access, fair distribution of technology, and the existence of a digital divide when implementing digital services to ensure justice in rehabilitation.
7.1.5. Professional–client relationship
The fifth ethical principle discusses the professional-client relationship. When designing and implementing digital services, it is important to consider the type and context of rehabilitation, as well as clients’ preferences for the relationship with the professionals.
In the field of digital services, that relationship might be potentially disrupted. The lack of human touch is seen as a concern, although the importance of touch may vary between different disciplines, cultures, and individuals. Furthermore, the trust between the client and the professional might be undermined, particularly if the two have never met in person. There might also be scepticism generated by unfamiliar equipment, as well as reluctance to speak openly through the devices due to privacy or communication concerns.
On the other hand, some clients might find digital communication settings more secure and feel they are more likely to be listened to by professionals compared to face-to-face communication situations. Communicating through digital solutions may reduce loneliness in clients who otherwise would have only a few options for interaction.
7.1.6. Other ethical considerations
In addition to the five key principles of ethics in health care, protecting the privacy and confidentiality of client health information and ensuring the security of the technology used in service delivery are paramount aspects to take into consideration when discussing ethics. For example, an ethical issue related to data privacy might occur when clients are requested to fill out an online survey without being informed about the purpose of the survey and the usage of the collected data. Digital technology (for example, video conferencing solutions) also literally opens the door to private homes and personal spaces where family members might be present. In that case, the privacy issues and involvement in the rehabilitation process are stretched to encompass other individuals in addition to the clients.
Professionals involved in the delivery of Digital Rehabilitation services must be adequately trained to use the technology effectively and safely to provide high-quality care and ensure client safety. It is also recommended to ask the clients for feedback about, among others, the efficiency of the service, the relationship with the professional, the acceptability of the solutions and technology, and the methods used in rehabilitation to ensure the quality of the services. Furthermore, professionals must adhere to local, state, and federal laws, regulations, and policies governing digital services related to rehabilitation and/or health. Learn more about the Policies and Regulation in Chapter 7.2. and about Cybersecurity and Data Protection in Chapter 7.3.