Ethical and Legal State of the Art and User Involvement

Confidentiality: Public

In a project such as LILY whose success depends on adequate and effective user involvement in order to achieve its goals, there is a variety of ethical issues that need to be taken into account. Whenever users are engaged in a research project, it is of pivotal importance to consider any ethical aspects with regard to recruitment and participation as well as documenting, recording, analyzing, processing, accessing and storing the data collected. To conduct ethically sound research means to show respect for one’s research subjects, for their dignity and autonomy, for their self- determination and therefore for their own decisions and standpoints. It also means to do no harm, to minimize the risks and maximize and share the benefits, and to ensure the research subjects’ safety and privacy. How these rather general terms can be and already have been translated in practice will be the topic this report.

This deliverable is organized in the following way: Chapter 2 forms a short introduction to the LILY project and the relevance of ethics in the project. In chapter 3 general ethical principles in research will be presented. In chapter 4 an overview of ethical issues emerging in various stages of a project and strategies to deal with these issues will be given. Chapter 5 contains short examples of case studies and project reports with a focus on the ethical guidelines which were developed by the authors. Chapter 6 presents questions to be posed in all stages of a user study in a checklist format and provides one sample confirmation document for informed consent that can be modified by partners for their use. The report concludes with a collection of policies and legal frameworks applicable in the countries where LILY research takes place.

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