WP1. Project Management
The main plan of WP1 is to provide a structured scheme for both the S&T coordination and non-technical management of all project’s activities. WP1 will guarantee successful coordination and cooperation among all the partners not only internally in the research team but outside as well and different work packages. WP1 is also planning to supervise the coordination of the network’s technical activities and is in charge for ensuring the delivery of project objectives. WP1 will coordinate the activities of the research team and work delivered, ensuring that all discussions, decisions, actions and minutes are recorded. WP1 will oversee and drive the knowledge management and dissemination of outputs through a dedicated project website. This work package is also responsible for networking, endorsement and relations with external relevant research groups and organizations. In addition, WP1 will secure the implementation of all project tasks as well as the production of all project deliverables and milestones according to the project schedule. The team members will review project outcomes and assess progress towards the objectives set at the beginning of the project. It will coordinate the actions of the management team, ensuring that all discussions, decision, actions and minutes are recorded. This work package will present a framework for the administrative and financial management of the project between the EC and the partners. Finally, WP1 will supervise the coordination other than technical like for instance: financial management systems; processes for providing the capacity to meet the project objectives; procedures for monitoring and evaluation; and practices for review, response and, if necessary, improvement.
WP2. Debate Coordination
An international debate is not an easy task to accomplish. It needs concrete planning, dedication and incentives. A list of stakeholders will be created as all important people and organisations (e.g. unions, NGOs etc) be involved. The scrutinizing of stakeholders already active in the ETHICAL consortium partners databases, specifically in the Fraunhofer IPK, IMPERIAL and EHTEL. It is important to state that within EHTEL’s membership and network of contact, there are representatives of all type of eHealth stakeholders, i.e. Ministries of Health, Implementation Agencies, Health professionals associations, Industrials, patient and Citizens representatives, Universities, Health insurers. EHTEL has already established three (3) Working Groups that have been active for some years: Ministries of Health WG, Implementation Agencies WG, Patient and Citizens Representatives WG. Also EHTEL has established partnership with associations representing Health Professionals on one side and Industrials on the other side and we are working with them to establish a dialogue with the other stakeholders and the Ministries of Health in particular. Also, the Ukrainian partner IBC, has a collaboration link with the on-line platforms, [www.biomedtalk.com] platform (this platform is for the English speaking audience) and [www.biomedtalk.net] (this platform is for the Russian and Ukrainian speaking audience) for scientists, physicians, manufacturers, vendors, employers and job-seekers will be established, in order to make the best deployment of the already existing asset. These networks will be highly beneficial for ETHICAL project, as they will assist the informed international debate. ETHICAL Consortium will work towards the implementation of an international debate in three specific issues: potential data misuse, development of a unique identifier and International standardization of ethical requirements. The debate will take place in ETHICAL CIP, but it will invite also the SINAPSE e-Community of NEC in order to find synergies in this important issue. Furthermore, collaboration with SINAPSE network will be stimulated by the dialogue articulation by the dedicated follow-up of the opinions expressed in order to have an efficient procedure. Additionally, wrap-up virtual sessions will be developed and conclusions will be derived. Security agencies are a concrete audience for dissemination and contribution for ETHICAL project.
WP3. Ethical Implications of Data Protection
The ethical implications of data collection, use and retention are an issue that affects substantially the citizens’ human rights. The ETHICAL Consortium will work on the case of identification the ethical implications as to form a stable basis for the debate coordination in WP2. Furthermore, the study of the relationship between government and industry in biometric and medical applications’ collaboration is an area where the community should focus and realize the potential risks. The ETHICAL Consortium will develop a guide (recommendations) on how this matter should be tackled, as to prevent subverting privacy laws in these partnerships. As globalization is not a trend but a real fact, everyone has to understand that issues as international data sharing do exist and should be confronted. A set of requirements for common international privacy principles will be one of the ETHICAL Consortium aims.
WP4. Policy Recommendations
The ethical implications of data collection, use and retention are an issue that affects the society both in social and financial level. This impact will be identified and categorised by the ETHICAL Consortium. Also, the potential risks associated with high-tech surveillance will form a basis for the international dialogue concerning the unique identifier issue. WP4 will lead to the development of ethical recommendations for EC policy directives. Although there is a mechanism in EC DG of Research regarding ethical aspects of research projects, there is a lack of a code of conduct for FP7 researchers, concerning medical and biometric data privacy. ETHICAL Consortium intends to cover this need by providing a code of conduct for FP7 researchers.
WP5. ETHICAL Cooperative Information Platform
The ETHICAL CIP is an important building block of the project. It will act as the networking virtual area for field stakeholders. The stakeholders are the vast majority of researchers, ethics involved scientists, organizations of human rights, technology developers, market and society as a whole. Its basic functionalities are described below:
ETHICAL CIP has web pages providing information about the project itself (e.g. Scope, Strategy, Work-Packages, Partners, Deliverables, News, Events, Links, Contact info etc, a consortium dedicated area included) and an interactive web platform where debate ETHICALment activities will be performed.
Individual stakeholders will provide information about their opinions and relevant experience and will communicate and discuss critical issues (WP2 identified issues) in the Forums designed for this reason. A permanent link with SINAPSE platform will be created.
Questionnaires developed for recording public opinions, will also be available through the ETHICAL CIP. These questionnaires will be accessible by the wider public but also will be sent to identified stakeholders from WP2.
WP6. Dissemination and Awareness
Awareness and Networking activities constitute a crucial part of ETHICAL project. Every CA has the mandate to make widely public all achievements and the new knowledge produced by the project. More to this, the transfer of knowledge is an action necessary, in order to stimulate the interaction among researchers.
ETHICAL website will be active from the very first days after the kick-off meeting. All Deliverables (except those of WP1) will be fully accessible from the ETHICAL website.
A virtual newsletter will be sent every 3 months to the registered users of the ETHICAL CIP, starting from the month 4 of the project.
The “Ethical requirements for international biometric and medical data sharing” will be published in hard copy and distributed to all relevant bodies of policy implementation in EC Member States and international stakeholders, identified by the project partners outside EU. This deliverable will be available for download from ETHICAL CIP, as well. Leaflets, brochures and informative printed formats for the workshops are planned and specific budget has been reserved.