Inclusion and Ethics Professor Simon Rogerson Centre for Computing and Social Responsibility De Montfort University, UK srog@dmu.ac.uk

ICT potential self-learning and adapting systems human activity recognition tracking technologies and sensors sharing of contextual information between different services and objects virtual community technologies

FP7 context research activities supported by the Framework Programme should respect fundamental ethical principles Charter of Fundamental Rights of the European Union opinions of the European Group on Ethics in Science and New Technologies (EGE) any proposal which contravenes fundamental ethical principles shall not be selected and may be excluded from the evaluation, selection and award procedures at any time

Due regard explicitly address ethical concerns the research its conduct its outcomes ethical issues beyond the obvious must be addressed likely that new, sensitive applications will come to the fore specific tasks or specific work package

Privacy right to privacy and data protection is a fundamental right Europeans view personal privacy as an important issue compliance with Data Protection legislation research volunteers have the right to remain anonymous manner in which research outcomes are reported must not contravene the right to privacy and data protection must carefully evaluate and report the personal privacy implications of the intended use or potential use of the research outcomes volunteers (conduct) and beneficiaries (outcome)

Informed consent whenever research involves volunteers in interviews, behavioural observation, invasive and non-invasive experimentation, and accessing personal data records empowers the individual to make a voluntary informed decision about whether or not to participate in the research based on knowledge of the purpose, procedures and outcomes of the research information must be given specifying the alternatives, risks, and benefits for those involved in a way they understand right to withdraw consent at any time and, if requested, associated data destroyed special consideration must be given when volunteers have reduced autonomy or are vulnerable

A typical sensitive area ICT implants and wearable computing devices must not: allow individuals to be located on a permanent and/or occasional basis, without the individual’s prior knowledge and consent allow information to be changed remotely without the individual’s prior knowledge and consent be used to support any kind of discrimination be used to manipulate mental functions or change personal identity, memory, self perception, perception of others be used to enhance capabilities in order to dominate others, or enable remote control over the will of other people

Enrich Your Elderly proposal ICT research aimed at increasing the independence and quality of life of the elderly suffering from dementia Conduct of research Collection of evidence from dementia sufferers Testing protocols Who defines quality of life Outcome of research Tracking and monitoring – right to privacy and autonomy Associated medical data and death of a person Potential misuse of application

An approach to addressing the ethical dimension Work Package which spans the life of the project. Start of Project Review Undertake a thorough review of the potential ethical and social impact of the project culminating in a Project Ethics Agenda which will guide both the substance and conduct of the research throughout the life of the project Intermediate Review(s) Review the project components and identify potential ethical issues regarding both the project process and the anticipated project outcomes End of Project Review Review the project outcomes to identify any inherent positive and negative ethical effects

Responsible research “The rapid pace of scientific and technological progress can give rise to serious ethical questions of concern to all Europeans. These questions may also have potential implications for future generations.” Science and Society Action Plan European Commission, 2002 srog@dmu.ac.uk