EPOCH Ethics and Public pOlicy making, the Case of Human enhancement Collaborative Project, 7 th Framework Program, Science –in-Society An overview of the project Ruud ter Meulen Centre for Ethics in Medicine University of Bristol

Participants 1. University of Bristol (UK) 2. Karlsruhe Institute of Technology (D) 3. University of Padua (I) 4. CNRS-University of Paris Descartes (Fr) 5. Maastricht University (NL) 6. University of Ljubljana (Sl) 7. Swansea University (UK) 8. National University of Singapore (Si) 9. University of Aarhus (DK) 10. University of Calgary (Cnd)

Goal of the project The overall goal of the project is to gain better insights into the potential contributions of ethics and ethical expertise in relation to the development of public policies on science and technology in the European context, in particular on issues of human enhancement by way of new and emerging technologies.

Objectives To provide sophisticated, practically relevant, insight into the relationship between normative issues, ethical expertise and science and technology policy making. To develop a framework, informed by multi- disciplinary perspectives, that can guide EU policy development in relation to a variety of issues concerning the use of S&T for the purpose of human enhancement

Research questions what types of ethical expertise are needed for the development of public policies? what models of governance are needed (also specifically regarding the involved expertise)?

Research methodology a comparative perspective which will include EU Member States as well as other parts of the world (America and Asia) where relevant; an overview of the kinds of evidence and expertise that are currently used by ethics committees and utilisation thereof; an exploration of how the input of ethics committees and public dialogue activities is used in decision and law-making processes; a focus on emerging fields of research and development and emerging trends in the relationship between normative issues, ethical expertise, and science and technology policy making.

Results (envisaged) The project will provide an overview on how selected enhancement issues (in particular physical and cognitive enhancements) are dealt with EU Member States, at EU level and elsewhere in the world. It will generate insight into cultural differences and shared values with regard to human enhancement. It will generate a normative framework which will be derived from ethical expertise and non-academic, public discourses on enhancement issues. It will identify cases of good or even best practice in the governance and regulation of enhancement issues.

Results (continued) The project will also seek to identify possible shortcomings in existing normative and regulatory frameworks and conflicts of policy objectives (for example the tension between progress in physical enhancement technologies and global anti-doping policies) The research is designed to provide insights into, and new ideas for, the regulation of enhancement technologies and for the governance of the topic of human enhancement in general.

Three main areas of the project 1. Ethics and Governance of Science and Technology: Bristol (lead), Maastricht, Ljubljana and Paris, supported by Work Packages 1,2,3,9 2. Human Enhancement and European Policy Making: Karlsruhe (lead), Bristol, Swansea, Aarhus and Calgary, supported by Work Packages 4,5, 6,7 3. Challenges to Regulatory and Legal Frameworks: Padua (lead), Swansea, Paris, Karlsruhe, Singapore and Bristol, supported by Work Packages 7, 8,9,10

Area 1 Ethics and Governance Research questions What is the impact of the empirical turn in bioethics on the role of theoretical and applied ethics, particularly in the context of public policy- making? Is their a role for ethical theory, normative ethics and ethical expertise in participatory approaches to public decision-making on science and technology? What are the roles of social scientists and ethicists in the governance of normative issues in science and technology? Does the disciplinary status of bioethics change in its interface with social science when assessing and governing science and technology? What will be the role of more traditional institutions such as ethics committees and other advisory bodies in assessing and governing new technologies and what is the role of ethical expertise in these committees?

Area 2 Human Enhancement and European Policy Making: Research questions What is the relevance of the distinction between therapeutic and non-therapeutic uses of technologies for policy-making on the use of technology for human enhancement? How can societal and cultural aspects, be taken into account, taking into account in discourses and governance activities dedicated to the topic of human enhancement? How can the position of vulnerable groups and disabled people be taken into account in the governance of technology for human enhancement? Is there a need for additional governance frameworks for physical enhancement in sport in addition to existing international doping policies? In which way will the regulation and governance of science and technology be affected by the possibilities of the use of these technologies for non-therapeutic, including human enhancement purposes? How can the discourses on human enhancement profit from a more systematic inclusion of gender aspects?

Area 3 Challenges to Regulatory and Legal Frameworks: Research Questions how can public participatory approaches and collective responsibility be integrated in socially inclusive models of governance of science and technology? is there a conflict between the normative approach of applied ethics on the one hand and empirical and participatory approaches on the other hand in the governance of science and technology? how can so-called soft approaches to the governance of science and technology be combined with hard and explicit models of regulation? what is the current role of advisory bodies in the assessment and governance of science and technology and what other governance models can or should be applied in this context? is there a role for vision and speculation about the future in the assessment and governance of new emerging technologies, particularly in relation to human enhancement? how can we take cultural differences into account, and how do European regulations of science and technology compare with other approaches in the global context?

Workpackages 1. Ethics and policy making (Bristol) 2. Governance and ethics (Maastricht) 3. Ethical Policy Advice (Ljubljana) 4. Enhancement technologies (Karlsruhe) 5. Enhancement discourses (Aarhus) 6. Enhancement policies (Karlsruhe) 7. Sport enhancement (Swansea) 8. Regulatory challenges (Padua) 9. Implementation options (Paris) 10. Global policy (Singapore) 11. Dissemination (Karlsruhe) 12. Final Conference (Padua) 13. Co-ordination (Bristol)

Milestones 1. Insight in the best possible model for governance of normative issues of science and technology 2. Insight in actual role of ethical expertise in public policy making 3. Insight in specific ethical expertise needed for public-policy making on science and technology 4. Deeper understanding of ELSI and governance aspects of enhancement technologies 5. Determining the need for new normative frameworks 6. Situating the governance policies and regulatory structures of the European Union regarding enhancement technologies in the global context 7. Development of guidance for including ethical expertise and public consultation in public policy-making

Workshops Area 1 (Month 14) Reports of WP 1,2,3 Area 2 (Month 16) Reports of WP 4,5,6 Area 3 (Month 18) Reports of WP 7,8,9 Global Policies Singapore (Month 20) Report WP 10 Final Conference (Month 22)

Management Project Management Office PMO (Bristol) Steering Group SC (Leads of Areas 1,2,3: Bristol, Karlsruhe, Padua) Academic Workpackage Management Management and Other Workpackages (WP 11,12,13)

Project Management Office Day-to-day project operation Communication with Commission Project infrastructure Knowledge and risk management Quality Assurance

Steering Committee Overall responsibility for Project Meets four times during project, with regular interim correspondence Agree project processes and frameworks Evaluate process and results

Management of the Project Monitoring Communication Dissemination

Monitoring WP Leads will monitor WP deliverables, milestones and financial matters. WP Leads will serve as the primary point of contact between the Coordinator/Project Management Office and the partners. WP Leads will contact the PMO on a regular basis (at least each quarter) to provide an informal update. SC will oversee progress at SC meetings. WP Leads will submit a formal progress report for each SC meeting (6 monthly), detailing progress towards tasks, deliverables and milestones.

Communication The project will be managed with principles of consistent and transparent communication between the PMO and all partners. The main mechanism of communication will be , with a shared mailbox address to be established in Bristol, to which the coordinator, project officer and project manager will have access. will be supplemented by the EPOCH website, which will contain a password-protected area for access by consortium members only as well as a repository for reports (non-public). All matters of interest to the consortium will be shared, including meetings, workshop and annual reports. Any communications from the Commission with implications for the consortium as a whole will also be shared.

Dissemination Dissemination Plan (to be developed by SC) Website (public and restricted) Involvement with public meetings and debates Releasing statements to the press; articles for popular consumption (including on the EPOCH website) Academic papers in scientific and bioethics journals and conference contributions.

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