Common use of Conceptual approach to ethics Clause in Contracts

Conceptual approach to ethics. In integrated care, the person (user/patient) centred approach represents the fundamental guideline. The basic principles of bioethics are relevant also in this context:  respect for persons;  beneficence; and  justice. In addition:  autonomy – one should respect the right of individuals to make their own decisions; and  non-maleficence – one should avoid causing harm. These principles will guide throughout the Project.  In the case of autonomy, pilot site staff is required to determine the wishes / preferences of the participant in order to respect his or her autonomy.  In the case of beneficence and non-maleficence, they are required to determine the participant’s views of what does and does not count as benefits to be pursued or harm to be avoided.  In the case of justice, they are required to follow due process in order to determine just limits on healthcare that will be accepted. When it comes to ICT-enabled forms of support directed towards older people, the combination of the inherent properties of relevant ICT applications (e.g. monitoring and automation), and the vulnerabilities / needs of older people (e.g. frailty, diminished capacity to protect their own interests, and risk of social isolation) have led to a considerable amount of ethical concern and attention1. In this perspective, ethics are about what the involved stakeholders 'should' do as the ‘right thing’, for the good of older people and those who may be collaterally affected (such as informal carers / family members) as well as for the common good more generally. While this is not exclusively targeted at ICT, it is important to mention the existence of the European Charter of the Rights and Responsibilities of older people in need of long-term care and assistance as a relevant reference document when working on such issues. The Charter results from a European project, and is available in 13 languages. Its implementation is supported by an Accompanying Guide2. 1 The EGE (European Group on Ethics in Science and New Technologies) opinion on Ethical Issues of Healthcare in the Information Society (1999; Opinion 13) reflects on such concerns, and lists the following applying to the area of healthcare, but which are equally relevant today for the application of ICTs in support of independent living more generally:  the pervasiveness of a technology which many people do not understand;  the lack of transparency that may be brought to the work of healthcare professionals and its effects on the doctor/patient relationship;  the difficulty in respecting privacy and confidentiality when third parties may have a strong interest in getting access to electronically recorded and stored personal health data;  the difficulty in ensuring the security of shared personal health data, and the lack of adequate infrastructure in certain regions and the absence of computer literacy in certain sections of the population which may reinforce existing inequalities. 2 More information is available at: xxxx://xxx.xxx-xxxxxxxx.xx/age-projects/health-and-long-term-care/659-xxxxxx. This Charter, adopted as a reference document throughout this Ethics and Data Protection Framework, provides guidance in ten articles on different important aspects of the life of older people in need of care and assistance, and as a consequence on aspects that will be considered in BeyondSilos. These ten aspects are:

Conceptual approach to ethics. In integrated care, the person (user/patient) centred approach represents the fundamental guideline. The basic principles of bioethics are relevant also in this context:  respect for persons, beneficence and justice;  beneficence; and  justice. In in addition:  autonomy – one should respect the right of individuals to make their own decisions; decisions – and  non-no maleficence – one should avoid causing harm. These principles will are intended to guide throughout the Project.  In the case of autonomy, pilot site staff is are required to determine the wishes / preferences of the participant in order to respect protect his or her autonomy.  In the case of beneficence and non-non- maleficence, they are required to determine the participant’s views of what does and does not count as benefits to be pursued or harm to be avoided.  In the case of justice, they are required to follow due process in order to determine just limits on healthcare that will be generally accepted. When it comes to ICTIT-enabled forms of support directed towards older people, the combination of the inherent properties of relevant ICT IT applications with relevance to this field (e.g. monitoring and automation), and the vulnerabilities / and needs of older people (e.g. frailty, diminished capacity to protect their one's own interests, and risk of social isolation) have led to a considerable amount of ethical concern and attention1. In this perspective, ethics are about what the involved stakeholders 'should' do as the ‘right thing’, for the good of older people and those who may be collaterally affected (such as informal carers / family members) as well as for the common good more generally. While this is not exclusively targeted at ICTIT, it is important relevant to mention the existence of the European Charter of the Rights and Responsibilities of older people in need of long-term care and assistance as a relevant reference document when working on such issues. The Charter results is the result from a European project, project and is available in 13 languages. Its ; its implementation is supported by an Accompanying Guide2. 1 The EGE (European Group on Ethics in Science and New Technologies) opinion on Ethical Issues of Healthcare in the Information Society (1999; Opinion 13) reflects on such concerns, and lists the following applying to the area of healthcare, but which are equally relevant today for the application of ICTs in support of independent living more generally:  the pervasiveness of a technology which many people do not understand;  the lack of transparency that may be brought to the work of healthcare professionals and its effects on the doctor/patient relationship;  the difficulty in respecting privacy and confidentiality when third parties may have a strong interest in getting access to electronically recorded and stored personal health data;  the difficulty in ensuring the security of shared personal health data, and the lack of adequate infrastructure in certain regions and the absence of computer literacy in certain sections of the population which may reinforce existing inequalities. Guide 2 More information is available at: xxxx://xxx.xxx-xxxxxxxx.xx/age-projects/health-and-long-term-care/659-xxxxxx. This Charter, adopted as a reference document throughout this Ethics and Data Protection Framework, provides guidance in ten articles on different important aspects of in the life of older people in need of care and assistance, and as a consequence on aspects that will be considered taken into account in BeyondSilosSmartCare. These ten aspects are:

Conceptual approach to ethics. In integrated care, the person (user/patient) centred approach represents the fundamental guideline. The basic principles of bioethics are relevant also in this context:  respect for persons, beneficence and justice;  beneficence; and  justice. In in addition:  autonomy – one should respect the right of individuals to make their own decisions; decisions – and  non-no maleficence – one should avoid causing harm. These principles will guide throughout the Project.  In the case of autonomy, pilot site staff is are required to determine the wishes / preferences of the participant in order to respect his or her autonomy.  In the case of beneficence and non-maleficence, they are required to determine the participant’s views of what does and does not count as benefits to be pursued or harm to be avoided.  In the case of justice, they are required to follow due process in order to determine just limits on healthcare that will be accepted. When it comes to ICTIT-enabled forms of support directed towards older people, the combination of the inherent properties of relevant ICT IT applications (e.g. monitoring and automation), and the vulnerabilities / needs of older people (e.g. frailty, diminished capacity to protect their one's own interests, and risk of social isolation) have led to a considerable amount of ethical concern and attention1attention 1. In this perspective, ethics are about what the involved stakeholders 'should' do as the ‘right thing’, for the good of older people and those who may be collaterally affected (such as informal carers / family members) as well as for the common good more generally. While this is not exclusively targeted at ICTIT, it is important to mention the existence of the European Charter of the Rights and Responsibilities of older people in need of long-term care and assistance as a relevant reference document when working on such issues. The Charter results is the result from a European project, project and is available in 13 languages. Its implementation is supported by an Accompanying Guide2. This Charter, adopted as a reference document throughout this Ethics and Data Protection Framework, provides guidance in ten articles on different important aspects in the life of older people in need of care and assistance, and as a consequence on aspects that will be taken into account in SmartCare. 1 The EGE (European Group on Ethics in Science and New Technologies) opinion on Ethical Issues of Healthcare in the Information Society (1999; Opinion 13) reflects on such concerns, and lists the following applying to the area of healthcare, but which are equally relevant today for the application of ICTs in support of independent living more generally:  - the pervasiveness of a technology which many people do not understand;  - the lack of transparency that may be brought to the work of healthcare professionals and its effects on the doctor/patient relationship;  - the difficulty in respecting privacy and confidentiality when third parties may have a strong interest in getting access to electronically recorded and stored personal health data;  - the difficulty in ensuring the security of shared personal health data, data and the lack of adequate infrastructure in certain regions and the absence of computer literacy in certain sections of the population which may reinforce existing inequalities. 2 More information is available at: xxxx://xxx.xxx-xxxxxxxx.xx/age-projects/health-and-long-term-care/659-xxxxxx. This Charter, adopted as a reference document throughout this Ethics and Data Protection Framework, provides guidance in ten articles on different important aspects of the life of older people in need of care and assistance, and as a consequence on aspects that will be considered in BeyondSilosxxxx://xxx.xxx-xxxxxxxx.xx/age-projects/health-and-long- term-care/659-xxxxxx. These ten aspects areare quoted in the next table:

Conceptual approach to ethics. In integrated care, the person (user/patient) centred approach represents the fundamental guideline. The basic principles of bioethics are also relevant also in this context:  respect for persons;  beneficence; and  justice. In addition:  autonomy – one should respect the right of individuals to make their own decisions; and  non-maleficence – one should avoid causing harm. These principles will guide throughout the Project.  In the case of autonomy, pilot site staff is are required to determine the wishes / preferences of the participant in order to respect his or her autonomy.  In the case of beneficence and non-maleficence, they are required to determine the participant’s views of what does and does not count as benefits to be pursued or harm to be avoided.  In the case of justice, they are required to follow due process in order to determine just limits on the healthcare that will be accepted. When it comes to ICT-enabled forms of support directed towards older people, the combination of the inherent properties of relevant ICT applications (e.g. monitoring and automation), and the vulnerabilities / needs of older people (e.g. frailty, diminished capacity to protect their own interests, and risk of social isolation) have led to a considerable amount of ethical concern and attention1. In this perspective, ethics are about what the involved stakeholders 'should' do as the ‘right thing’, for the good of older people and those who may be collaterally affected (such as informal carers / family members) as well as for the common good more generally. While this is not exclusively targeted at ICT, it is important to mention the existence of the European Charter of the Rights and Responsibilities of older people in need of long-long- term care and assistance as a relevant reference document when working on such issues. The Charter results from a European project, and is available in 13 languages. Its implementation is supported by an Accompanying Guide2. 1 The EGE (European Group on Ethics in Science and New Technologies) opinion on Ethical Issues of Healthcare in the Information Society (1999; Opinion 13) reflects on such concerns, and lists the following applying to the area of healthcare, but which are equally relevant today for the application of ICTs in support of independent living more generally:  the pervasiveness of a technology which many people do not understand;  the lack of transparency that may be brought to the work of healthcare professionals and its effects on the doctor/patient relationship;  the difficulty in respecting privacy and confidentiality when third parties may have a strong interest in getting access to electronically recorded and stored personal health data;  the difficulty in ensuring the security of shared personal health data, and the lack of adequate infrastructure in certain regions and the absence of computer literacy in certain sections of the population which may reinforce existing inequalities. 2 More information is available at: xxxx://xxx.xxx-xxxxxxxx.xx/age-projects/health-and-long-term-care/659-xxxxxx. This Charter, adopted as a reference document throughout this Ethics and Data Protection Framework, provides guidance in ten articles on different important aspects of the life of older people in need of care and assistance, and as a consequence on aspects that will be considered in BeyondSilos. These ten aspects are: