CENTERFOR ETHICS AND LAW

IN BIOMEDICINE

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...................................................... ANNUAL REPORT.......................................

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Editor-in-chief: Judit SándorExecutive editor: Enikő Demény

© December 2013 Center for Ethics and Law in Biomedicine (CELAB)

ISSN 1992-4038

CELAB Report is published annually

Address: 1051 Budapest Nádor u. 9. HungaryTelephone: +36-1-327-3000/ext.2128Fax: +36-1-327-3220E-mail: celab@ceu.huWebsite: http://www.ceu.hu/celab

Design and layout: Zsolt SándorPrinted in Hungary by FOM kft.

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TABLE OF CONTENTS1. FOREWORD . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 22. RESEARCH AND POLICY ACTIVITIES . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6

2.1. PARTICIPATION AND COLLABORATION IN RESEARCH NETWORKS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 62.1.1. Neuro-Enhancement: Responsible Research and Innovation (NERRI) . . . . . . . . . . . . . . . . . . . . . . . 62.1.2. EUCelLEX: Cell-based Regenerative Medicine:

New Challenges for EU Legislation and Governance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 72.1.3. Infertility and the Socio-Technical Practice of Assisted Reproductive Technologies . . . . . . . . . . 82.1.4. Disaster Bioethics Project . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 92.1.5. Equal Opportunities for Heath: Action for Development . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 92.1.6. International Academic Network on Bioethics (IANB) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 102.1.7. Bio-Archaeological Heritage Project . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11

2.2. POLICY AND OUTREACH ACTIVITY . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 122.2.1. Third ELPAT Congress: Ethical, Legal and Psychosocial Aspects

of Transplantation: Global Issues, Local Solutions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 122.2.2. Studies in Biopolitics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 132.2.3. European Conference of the European Health Law Association . . . . . . . . . . . . . . . . . . . . . . . .132.2.4. Ethical Thinking: Past and Present International Conference . . . . . . . . . . . . . . . . . . . . . . . . . .142.2.5. Forthcoming Events: 28th European Conference on Philosophy

of Medicine and Health Care, Bioethics and Biopolitics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 143. ACADEMIC ACTIVITIES . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15

3.1. PUBLIC LECTURES . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 153.1.1. “Biopolitics and Beyond: Vibrant Matter and the Political Economy of Life”

by Professor Thomas Lemke . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 163.2. TEACHING . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17

3.2.1. Teaching at the Central European University . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 173.2.2. Teaching and Lecturing at Other Institutions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17

4. RESEARCH FELLOWS AT CELAB . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 205. EVENTS AND ACHIEVEMENTS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 22

5.1. PARTICIPATION IN CONFERENCES . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 225.2. SCIENCE COMMUNICATION AND MEDIA EVENTS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 265.3. PUBLICATIONS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .275.4. AWARDS, APPOINTMENTS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 30

6. BUDGET . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 326.1. REVENUES IN AY 2012/2013 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 326.2. SPENDING IN AY 2012/2013 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 32

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Thus cites Nicolas Rose himself in his latest work, Neuro, and this re-confirmed statement soundsespecially reassuring when we start our new research project on neuroenhancement. In March 2013CELAB started a new European research project on neuro-enhancement with the aim to study and ana-lyze responsible research and innovation (hence the acronym of the project: NERRI). NERRI is a Coordi-nation and Support Actions type of project financed by the European Commission. Jointly with the Cen-ter for Ethics and Law in Biomedicine (CELAB) 18 partners from 11 countries are active within this proj-ect, coming from Austria, Belgium, Denmark, Germany, Hungary, Iceland, Italy, the Netherlands, Portu-gal, Spain, and the United Kingdom. The main objective of this FP7 Framework Project is to shape thefuture European agenda “Responsible Research and Innovation” in the field of human enhancement,through an intense “Mobilization and Mutual Learning” process that engages scientists, policy-makers,the business sector, and the wider public. Project participants will prepare, stimulate and mobilize multi-stakeholder dialogues on neuro-enhancement and explore strategies for the management of a pluralityof views, needs, expectations, and fears in relation to neuro-enhancement within societies and betweenEU member states. It is also the intention of the project to identify specific problems at the level of indi-vidual enhancement technologies, as well as in the field of policy and regulation. In light of the princi-ples of good-governance, outlined in EU documents, the project explores and evaluates differentapproaches to the funding, research, and distribution of enhancement technologies.

In the framework of this project we have conducted sixteen interviews with NGOs, groups of disabledpersons, scientists (in the field of cognitive science, biology, neurology, and brain research), and mem-bers of ethical decision making bodies. Sometimes it was a challenge to persuade stake holders to speakabout neuro-enhancement. But we have learnt a lot from the interviews, for instance we realized thatenhancement of individual capabilities is not a generally desired aim of interventions; representatives ofdisability groups, for example, emphasize the need for ‘social enhancement’: the development of a tol-erant and inclusive society, rather than a technocratic solution that focuses merely on some specific‘enhanceable’ human capacity. Enhancement poses challenges also from a normative point of view. Onone hand, it shakes the (in itself also contestable) dichotomy between normal and pathologic, and on theother hand, it provides a too broad approach for legal and ethical discourses. Over the course of the 20thcentury we witnessed the emergence of preventive medicine and the management of normality. Somehave even argued that enhancement technologies may be the next step in the gradually expanding scopeof medicine, as a result of which ‘normal’ functioning and the body being merely ‘healthy’ will come tobe viewed as defective. The distinction between ‘normal’ and ‘non-normal’ or ‘pathological’ has longbeen a source of tension between the medical sciences, on the one hand, and social sciences and phi-losophy, on the other. As quantitative tools entered medicine, ‘normal’ became associated with ‘the

1. FOREWORD

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1 . F O R E W O R D 3

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mean’ and was dissociated from subjective clinical judgments. The kickoff meeting of this project was held in Marchin Cascais (in Portugal), followed by a special session in Lisbon organized by the Ciência Viva. The first project meet-ing was held in Barcelona in November, 2013. The project will last for three years.

During the 2012–2013 academic year we have participated in the preparation of another Seventh FrameworkResearch Project, entitled “Cell-Based Regenerative Medicine: New Challenges for EU Legislation and Governance”(Acronym: EUCelLEX). In this project CELAB will assess the interactions between EU legislation and the procurementof human (embryonic, fetal, and adult) stem cells for research and innovation. For the legal part of this analysis weshall also analyze the legal framework of certain selected countries in more detail and the implementation of EU leg-islation into national law. In the analysis of the European legal debates we shall also look at the opinions of the EGE.The major selection criteria of the legal analysis will be based on the countries represented in this project (Belgium,Canada, France, Germany, Hungary, the Netherlands and the United Kingdom) and when it is necessary to highlight aspecific legal framework, we shall also look at the regulation in other countries. The project started in October 2013and the kick-off meeting was held in Paris in December, 2013.

In the 2012–2013 academic year we completed a two-year European research project on organ donation and organtrafficking (EULOD). As a result of this project, two edited books have been published with project participants sum-marizing their main research findings in their chapters. Our team argued against the commercialization of organtrade, we developed a strong criticism against organ tourism and offered some legal solutions for the better enforce-ment of existing legal norms and enhancing international cooperation in this field. We have another running projecton Equal Opportunities for Health: Action for Development, which is expected to be completed in January 2014.

One of our longest, still on-going international projects is the “International Academic Network on Bioethics”(French acronym: RUIB, English acronym: IANB), which conducts annual workshops of legal experts and physicians,philosophers and sociologists from seventeen countries (Brazil, Belgium, Chile, France, Germany, Greece, Hungary,Italy, Japan, Lebanon, Senegal, Spain, Switzerland, Tunisia, Turkey, U.K., and U.S.). In 2013 three books came out as aresult of our collaboration in previous workshops. Two books were related to the workshop on the ethics of end-of-lifetreatment decisions: one in French, Les proches et la fin de vie médicalisé, and one in English, Families and End-of-Life Treatment Decisions: International Perspective. The chapters of these books analyze the current status and therole of relatives (and non-relatives) close to the patient at the end of life. Another book in French was published in Octo-ber 2013, entitled Corps de la femme et Biomédecine: Approche international, edited by Amel Aouij-Mrad and BrigitteFeuillet-Liger. The English version, containing chapters elaborated at a 2011 workshop that explored the relationshipbetween the female body and biomedicine, is expected to be published in early 2014 with the title The Female Body: AJourney Through Law, Culture and Medicine, edited by Thérèse Callus, Brigitte Feuillet-Liger and Kristina Orfali. Manypossibilities are offered to women through biomedical techniques: from assistance to procreate (with assisted repro-

We argue that despite their apparent contradictions, neurobiological research emphasiz-ing the role of non-conscious neural processes and habits in our decisions and actionscan—and does—happily coexist with long-standing ideas about choice, responsibility, andconsciousness that are so crucial to contemporary advanced liberal societies.

(Nikolas Rose and Joelle M. Abi-Rached, Neuro: The New Brain Sciencesand the Management of the Mind, 2013:21)

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duction); to refusal to do so (contraception, voluntary sterilization, termination of pregnancy); to be informed of genet-ic predispositions (through the use of available genetic tests); or to improve their physical appearance with cosmeticsurgery. But a recurrent question arises: with its rapid progress and its extreme medicalization of the body, can bio-medicine liberate women? Or rather, given the risks of the commodification of the body or its parts, is it not a sourceof exploitation? These questions are explored by the authors of this work: jurists, anthropologists, philosophers, soci-ologists and medical doctors. The contributions to this international multidisciplinary study from nineteen countriesanalyze the reality of the amazing developments of biomedicine on the female body. Numerous systems are comparedfor the first time: European, African, North and South American, but also Chinese and Japanese. Beyond highlightingdifferences, and identifying similarities in the development of ‘enhancement medicine’, the ultimate objective of thiswork is to show the complexity surrounding the question of a woman’s freedom over her body and the extent to whichthis is limited by the state. All books within this project are published by Bruylant (Brussels). The project conferenceshave been held so far in Rennes, France (2007), Kyoto, Japan (2009), Rennes again (2010), Tozeur, Tunisia (2011), andin Rio de Janeiro, Brazil (in 2012). The upcoming workshop will be organized in Brussels in December 2013.

The E-Rare Project organized a workshop on January 14, 2013 in Tel Aviv, Israel by the Chief Scientist Office of theHealth Ministry of Israel, a member of E-Rare Consortium. It addressed the social, ethical and legal implications oflarge-scale exome/genome sequencing in the context of research on rare diseases. The planned joint publication alsodraws upon the contemporary debates within RD-Connect, an international project working to provide an integratedplatform connecting databases, registries, biobanks and clinical bioinformatics for rare disease research.

In Hungary we participate in a research project on “Infertility and the Socio-Technical Practice of Assisted Repro-ductive Technologies.” The aim of this project, financed by OTKA (National Scientific Research Fund), is to investigateissues that are relevant both on the academic and the policy level. The goal of is to conduct cutting edge research, theresults of which are important for international audiences and can be published in leading international journals,whilst at the same time being of practical relevance. In the pilot phase of the research, literature review and qualita-tive data analysis is conducted, then in the first phase 40 semi-structured interviews are made with stakeholders(experts, law-makers and medical practitioners), and in the second phase 40 semi-structured interviews with infertil-ity patients who have decided to take part in ART treatment.

In 2013 we continued our popular CELAB lecture series. CELAB has organized many conferences, workshops andpublic lectures that focused on the ethical, legal, and social challenges of the new scientific advances in the field ofbiomedicine. In previous Sessions distinguished speakers, such as John Harris, Inez de Beaufort, Donna Dickenson,Nicolas Rose spoke on various challenges for contemporary biomedicine. Challenges that come from the humandesire and demand for enhancement, for longevity, and also for commercialization and commodification of the humanbody are at the core of ethical debates that engage a large range of disciplines inside and outside of the life sciences.In May 2013 Thomas Lemke, Professor of Sociology at the Faculty of Social Sciences of the Goethe-University Frank-furt am Main in Germany gave an interesting lecture entitled “Biopolitics and Beyond: Vibrant Matter and the PoliticalEconomy of Life.”

Biopolitics was also the topic of a new book that we published within the CELAB Book Series. Studies in Biopoli-tics is a collection of multidisciplinary case studies on biopolitical practices and discourses contributed by political sci-entists and public policy experts, anthropologists and philosophers, biologists and bioethicists, legal scholars andhuman rights activists, as well as advanced graduate students at the Central European University (CEU). The majori-ty of the authors have participated in graduate courses in political science and gender studies at CEU, focusing on thehuman rights aspects of biopolitics and the various forms of commercializing the human body. Some of the case stud-

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ies have emerged from these courses and thus the chapters of this book are not only thematically inter-related but also share similar analytical perspectives. This is the result of long hours of discussion dur-ing the classes, following film screenings or emerging after public lectures on biopolitics organized byCELAB.

The cultural diversity and multilingual academic environment that characterize CEU have made itpossible to develop a pool of unique cases on biopolitics from Armenia, Georgia, Germany, Egypt, Hun-gary, India, Israel, Poland, Romania, Russia, Serbia, Tunisia, and Turkey. This collection of essays reflectsnot only the lively discussions we had during CEU courses and CELAB events, but also provides chal-lenging cases for further comparative studies on biopolitics. There are chapters that discuss new, inno-vative forms of old population control policies, while others explore the consequences of the emergingbiotechnologies, including stem cell research. Some of the texts in this book analyze the biopolitics ofthe state, while others seek to understand the ‘biopractice’ of traditional communities. The book is edit-ed by the director of CELAB, Judit Sándor.

A late but very important fruit of a conference held in Rio de Janeiro in 2010, with the support of theEuropean University Institute (Florence) and the Getúlio Vargas Foundation (Brazil), came out in 2013.The book entitled New Technologies and Human Rights was edited by Mario Viola de Azevedo Cunha,Norberto Nuno Gomes de Andrade, Lucas Lixinski and Lúcio Tomé Féteira, and it is a collaboration ofscholars from Brazil, Hungary, Italy, and Portugal.

The final book including the main findings of the RemediE Project was also published in 2013. Edit-ed by Andrew Webster, The Global Dynamics of Regenerative Medicine was published by PalgraveMacmillan.

We also participated in several summer university programs. The Riga Summer School on the Euro-pean Health Law and Ethics was held in June, where in addition to one CEU faculty, four CEU studentsalso participated. In 2013 a two-year CEU project on bio-archeological heritage came to its end. The proj-ect results were discussed at a conference and in the CEU summer university program. The closing con-ference was held in July with the title: “The Bodies of our Anchestors: Ancient Human Remains and thePast in the Future.

Another important event during the summer was the Galilee Colloquium in Kfar Blum, Israel aboutbioethics and philosophy. Scholars from Israel and other countries analyzed contemporary issues ofbioethics, such as personalized medicine, pre-implantational genetic testing, organ tourism, and med-ical research in emergency situation. One full professor and two guest professors of CEU participated inthis seminar.

2012–2013 was an academic year with intensive research and a wide range of publications. Moreinformation about the activities of CELAB can be found at our website (celab.ceu.hu) and followed on ourFacebook page (www.facebook.com/pages/CELAB/321473511079). We have many plans for the future:in the 2013–2014 academic year we are going to organize four events on the ethical and legal aspects ofneuroscience and one event on stem cell research.

Judit SándorDirector of the Center for Ethics and Law in Biomedicine (CELAB)

Central European University

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22..11..11.. NNeeuurroo--EEnnhhaanncceemmeenntt:: RReessppoonnssiibbllee RReesseeaarrcchhaanndd IInnnnoovvaattiioonn ((NNEERRRRII))

TTyyppee ooff ffuunnddiinngg sscchheemmee:: EU FP7 Coordination andSupport Actions SSttaarriinngg ddaattee:: March 15, 2013

PPaarrttiicciippaattiinngg IInnssttiittuuttiioonnss:: Ciência Viva—Agência Nacional para a Cultura Cientí-

fica e Tecnológica, PortugalLondon School of Economics and Political Science,

United KingdomRadboud University Nijmegen, the NetherlandsAustrian Academy of Sciences, AustriaScuola Internazionale Superiore di Studi Avanzati, ItalyInstituto de Biologia Molecular e Celular, PortugalTilburg Law School, Tilburg University, the NetherlandsJohannes Gutenberg Universität, Mainz, GermanyJohannes Kepler Universität, Linz, AustriaKings’ College, United KingdomEuropean Brain Council, BelgiumUniversitat Pompeu Fabra, Catalonia, SpainCELAB, Central European University, Hungary

CELAB (CEU Center for Ethics and Law in Biomed-icine) recently started an exciting FP7 project onneuro-enhancement: responsible research and

innovation (Acronym: NERRI). It is a project withoutstanding international partners, and with a totalbudget of 3,287,632 € (including overheads). TheCELAB research team is chaired by Prof. Judit Sán-dor. The project will run for three years and involves18 research centers from across Europe. The con-sortium comprises experts in the neurocognitivesciences, the social sciences and humanities, andscience communication. The main aim is to con-tribute to the introduction of Responsible Researchand Innovation (RRI) perspectives in the field ofneuro-enhancement (NE) and to the shaping of anormative framework underpinning the governanceof NE technologies. In the field of neuro-enhance-ment, contemporary biomedicine has reached acrucial turning point at which it has become possi-ble not only to restore health but also to improve itbeyond its normal functioning.

To structure this complex socio-technical domain,this project will propose an Analytic Classification ofNE technologies into currently available methods,experimental and hypothetical technologies. Each ofthe types raises some fundamental ethical, legal,social and economic issues, which have different rel-evance to various societal groups, point to differentmethods of stakeholder engagement, and may re-quire different regulatory approaches. Over thecourse of the project, the Analytic Classification willbe developed and extended in the work packages.Mobilization will form the central commitment of theproject from the outset to the conclusion. Based onthe Analytic Classification, it will stimulate and or-

2. RESEARCH AND POLICY ACTIVITIES

2.1. PARTICIPATION AND COLLABORATION IN RESEARCH NETWORKS

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ganize a broad societal dialogue employing state-of-the-art engagement methodologies tailored to spe-cific contexts (education, health, work and research)and stakeholders (producers, users and intermedi-aries). Furthermore, project participants will synthe-size their national experiences, map the contours ofa normative framework as it emerges from societalengagement and dialogue, and elaborate the conceptof RRI in Europe.

The Consortium comprises experts in the neu-rocognitive sciences, the social sciences, law, phi-losophy, communication studies, and public engage-ment with science and technology. Many partici-pants have prior experience of EU projects and ofsuccessful collaboration with other members of theconsortium.

In the first year of this project CELAB researchersconducted sixteen interviews with NGOs, groups ofdisabled persons, scientists (in the field of cognitivescience, biology, neurology, and brain research), andmembers of ethical decision-making bodies. In theinterviews we learnt that enhancement of individualcapabilities is not a generally desired aim of interven-tions; representatives of disability groups, for exam-ple, emphasize the need for ‘social enhancement’:the development of a tolerant and inclusive society,rather than a technocratic solution that focusesmerely on some specific ‘enhanceable’ human capac-ity. Enhancement poses challenges also from a nor-mative point of view.

Judit Sándor and her team will par-ticipate in the identification of norma-tive anchors that have emerged fromvarious EU policy instruments and willconduct several interviews. Further-more, CEU will host several so-called“Mobilization and Mutual Learning”(MML) activities in the framework ofthis project. In the end, from the sum-maries of the MML exercises partici-pants will develop concrete options forgovernance, synthesizing them into acoherent framework.

The kick-off meeting of this projectwas held in March in Cascais (in Portu-gal) followed by a special session in Lis-bon organized by Ciência Viva. The firstproject meeting was held in Barcelonaat the end of November, 2013. This proj-ect will last for three years.

Duration: 2013–2016CELAB participants in the project: Judit Sándor, Már-ton Varju and Enikő Demény

22..11..22.. EEUUCCeellLLEEXX:: CCeellll--bbaasseedd RReeggeenneerraattiivvee MMeeddiicciinnee::NNeeww CChhaalllleennggeess ffoorr EEUU LLeeggiissllaattiioonn aanndd GGoovveerr--nnaannccee

TTyyppee ooff ffuunnddiinngg sscchheemmee:: EU FP7SSttaarrttiinngg ddaattee:: October 1, 2013

PPaarrttiicciippaattiinngg IInnssttiittuuttiioonnss::

Institut National de la Santé et de la RechercheMedicale (INSERM), France

Gottfried Wilhelm Leibniz Universität Hannover, Ger-many

CELAB, Central European University, HungaryLegal Pathways BV, the NetherlandsThe Chancellor, Masters and Scholars of the Univer-

sity of Oxford, United KingdomMedizinische Universität, Graz, AustriaFondation Nationale des Sciences Politiques

Sciences Po, FranceKatholieke Universiteit Leuven, Belgium Royal Institution for the Advancement of Learning,

McGill University, Canada

In April 2013, another project in which CELAB par-ticipates was also favorably evaluated by the Euro-

2 . R E S E A R C H A N D P O L I C Y A C T I V I T I E S 7

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pean Commission with the help of independent ex-perts. It is titled Cell-Based Regenerative Medi-cine: New Challenges for EU Legislation and Go-vernance (Acronym: EUCelLEX). Accordingly, theCommission is now in the process to negotiate aGrant Agreement on the proposal. This project willlast for three years, and it started officially on Octo-ber 1, 2013 and the kick-off meeting was held inParis, December 4, 2013. The coordinator of thisproject is the Institut National de la Santé et de laRecherche Medicale (INSERM).

The EUCelLEX Project’s chief objective is to exa-mine current legislation concerning the therapeuticuse of somatic cells, in both the public and privatesectors and in a number of European countries. Tothis end, the project aims to assess the relevance ofcurrent European legislation in order to provide thedata needed to establish a European framework forthe use of stem cells of every type (embryo, adult andIPS cells from cord blood) in the light of recentscientific, legal and institutional developments inEurope. To obtain a complete picture of the Europeansituation, the legal study will be complemented by anexamination of current clinical practices togetherwith the many ethical recommendations throughoutEurope. Starting with the observation that the entiretranslational process, from research to the marketingof a product, is only partially covered by the EU rules,the teams will need to examine the heterogeneousnature of the legislation due to the freedom of actionallowed to the member states.

Initially, each of the partners in the project willneed to examine the legislation and the policies intheir respective countries governing the use of stemcells at both national and European level. They will thencompare current legislation with the practices that aredue to develop stem cells in the near future, moreespecially in the research infrastructures to highlightthe deficiencies and propose sustainable solutions.Special interest will also be paid to emerging practicessuch as ‘cell tourism’ or the use of unproven thera-pies. For example, in some European countriesdoctors propose to use regenerative medicine tech-niques which have yet to be scientifically validated andwhich do not meet the safety criteria imposed by bothFrench and European legislation.

The ultimate objective is to make recommenda-tions to the European Commission so as to facili-tate the use of stem cells for clinical purposes in astabilised legal context. Thus the results of theproject will enable innovation in research and help

the European states to implement specific legis-lation in this field.

In this project CELAB will assess the interactionsbetween EU legislation and the procurement ofhuman (embryonic, fetal, and adult) stem cells forresearch and innovation. For the legal part of thisanalysis we shall also analyze the legal framework ofcertain selected countries in more detail and theimplementation of EU legislation into national law. Inthe analysis of the European legal debates we shallalso look at the opinions of the European Group onEthics (EGE). The major selection criteria of the legalanalysis will be based on the countries represented inthis project (Belgium, Canada, France, Germany,Hungary, the Netherlands, and the United Kingdom)and, when it is necessary to highlight a specific legalframework, we shall also look at the regulation inother countries. Shortly after the project officiallystarted in October, CELAB participants in the projectconducted several preliminary interviews withstakeholders in Madison, Wisconsin, the UnitedStates on November 7–8, 2013.

Duration of the Project: 2013–2016CELAB participants in the project: Judit Sándor andMárton Varju

22..11..33.. IInnffeerrttiilliittyy aanndd tthhee SSoocciioo--TTeecchhnniiccaall PPrraaccttiiccee ooff AAssssiisstteedd RReepprroodduuccttiivvee TTeecchhnnoollooggiieess

TTyyppee ooff ffuunnddiinngg sscchheemmee:: OTKA (National ScientificResearch Fund) Research GrantSSttaarrttiinngg ddaattee:: October 1, 2013

The aim of this project, financed by OTKA (NationalScientific Research Fund), is to investigate issuesthat are relevant both on the academic and the poli-cy level. The goal of is to conduct cutting edge re-search, the results of which are important for inter-national audiences and can be published in leadinginternational journals, whilst at the same time beingof practical relevance. In the pilot phase of the re-search, literature review and qualitative data analy-sis is conducted, then in the first phase 40 semi-structured interviews are made with stakeholders(experts, law-makers and medical practitioners),and in the second phase 40 semi-structured inter-views with infertility patients who have decided totake part in ART treatment.

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Participants in the research are Lilla Vicsek (theproject coordinator focusing on social aspects), JuditSándor (ethical and legal aspects), Gábor Király(theories of science and technology studies), ZoltánNavratyil (legal aspects), Zsófia Bauer (PhD student,social aspects of biotechnologies), and VeronikaPaksi (PhD student). The core methodology is quali-tative research with active network theory. The proj-ect starts in October 2013 and will be completed onSeptember 30, 2017.

22..11..44.. DDiissaasstteerr BBiiooeetthhiiccss PPrroojjeecctt

TTyyppee ooff ffuunnddiinngg sscchheemmee:: COST IS1201SSttaarrttiinngg ddaattee: April 1, 2013

Disasters overwhelm local and often national capacityto respond effectively. Significant imbalances resultbetween needs and available resources. Disastershave become more frequent and more costly, trendsare predicted to continue. As a result, disaster riskreduction and management are important priorities fornational, European and global agencies. Ethical deci-sions must be made throughout disaster planning andin responses. High level statements stress the impor-tance of disaster ethics and putting people first in dis-asters. Yet few resources are available for disasterethics decision-making. Policy makers, humanitarianagencies and individual responders seek ethical guid-ance and training materials to better address the chal-lenging and distressful ethical dilemmas in disasters.Evidence-based knowledge is required to promotehigh-quality ethical decision-making.

This Action aims to improve ethical decision-mak-ing for disasters by gathering knowledge of the ethi-cal dilemmas and issues, carefully examining them,and developing training materials and publish re-sources to address disaster ethics. These outputs willassist policy-makers, humanitarian organizations,healthcare professionals, researchers and the public.The Action will benefit European citizens, organiza-tions and states who already provide extensive re-sources for disaster relief. Thereby, the Action willbenefit those affected by disasters that impact lowerincome countries disproportionately and the morevulnerable within those regions.

The scientific kickoff meeting of the project washeld at Dublin University on April 25–26, 2013.

Participant: Péter Kakuk, Management CommitteeMember and Financial Rapporteur

22..11..55.. EEqquuaall OOppppoorrttuunniittiieess ffoorr HHeeaatthh:: AAccttiioonn ffoorrDDeevveellooppmmeenntt

PPaarrttiicciippaattiinngg IInnssttiittuuttiioonnss::

Doctors with Africa—Cuamm, ItalyDepartment of Medicine and Public Health [Diparti-

mento di Medicina e Sanitŕ pubblica], Universitŕdi Bologna, Italy

Italian Global Health Watch [Osservatorio Italianosulla Salute Globale], Italy

Italian Secretariat of Medical Students [SegretariatoItaliano Studenti di Medicina], Italy

Regione Veneto, ItalyTransilvania University of Braşov, RomaniaMedicine Students Scientific Association of Braşov,

RomaniaRedemptoris Missio Foundation, PolandPoznań University of Medical Sciences, PolandInternational Federation of Medical Students’ Asso-

ciation, PolandPapardes Zieds Association, LatviaMedical University of Pleven, Bulgaria

IInn aassssoocciiaattiioonn wwiitthh::CELAB, Central European University, HungaryAssociation of Medical students in Bulgaria, Pleven

branch, BulgariaPersonality Development and Human Communities

Association, BulgariaLatvian Medical Students’ Association, LatviaUniversity of Latvia, LatviaMalta Medical Students’ Association, MaltaNational Federation for the Orders of Doctors and

Dentists [Federazione Nazionale Ordine MediciChirurghi e Odontoiatri], Italy

Universities, organizations and student associationsfrom seven European countries are involved in thisproject, united by a common interest in Global Healthand its teaching. Equal opportunities for health:

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action for development is an education and aware-ness-building project designed to highlight the im-portance of approaching health as a fundamentalhuman right closely related to individual social devel-opment.

The aim of the project—of which Doctors withAfrica CUAMM is the lead organization—is to makeEuropean public opinion aware of the close linkbetween health and development and to make themedical and health community—doctors, health pro-viders, lecturers, trainers, and medical students—responsible for taking action.

To goal is to promote discussion and dissemina-tion of the Global Health paradigm, understood as a“panoramic” approach to health, to be able to theo-retically transpose into practice social determinantsof health, values of justice and equity identified in theDeclaration of Alma Ata, and an analysis of the grow-ing interdependence between populations and coun-tries determined by processes of globalization and itsimpact on health and health inequalities both in andamong countries.

As Associate Partner CELAB participates in Part-nership Meetings organized in the framework of theproject. The fifth Partnership Meeting took place inBraşov, Romania on May 14–16, 2013. Enikő Deményrepresented CELAB and gave input for the new proj-ect that will be submitted for funding. The last projectmeeting will take place in January 2014 in Padua,Italy.

CELAB participants in the project: Judit Sándor andEnikő Demény

Duration of the project: 2011–2014Website: http://www.educationglobalhealth.eu/en/

22..11..66.. IInntteerrnnaattiioonnaall AAccaaddeemmiicc NNeettwwoorrkk oonn BBiiooeetthhiiccss((IIAANNBB))

Although scientific advances in biomedicine con-tribute to human wellbeing, they can also lead to dan-ger, thereby threatening fundamental human rights.As a result, the International Academic Network onBioethics has decided to tackle these issues in a sys-tematic manner. The IANB seeks to contribute tointernational reflection on biomedical questions thatmany countries are facing. The IANB is unique insofaras it is led by academics from many different coun-tries. Consequently, it participates in the developmentof a necessary international perspective on bioethicsresearch. However, although steered by academics,the Network actively collaborates with other non-aca-demic professionals who specialize in the field of bio-medicine.

Made up of lawyers at its core, the Network existsto conduct multidisciplinary research. The law ondiverse issues in bioethics in different countries—andconsequently cultures—is presented and analyzedthrough the prism of various disciplines. In this way,law serves to reveal the social perception of bioethicalissues. The work of the Network therefore goes furtherthan merely presenting different legal provisions: itexamines the law from such diverse standpoints asanthropology, philosophy, sociology, medicine, psycho-analysis and even economics. The IANB is made up ofacademics belonging to different cultures. Through itscomparative law publications, it furthers research onissues in bioethics between many countries of theworld. The chosen themes thus allow an exploration ofthe legal regimes in each country and assist ourunderstanding of the different underlying cultural andreligious foundations. Each study is presented by aminimum of the eighteen permanent members of theIANB (Belgium, Brazil, Chile, France, Germany,Greece, Holland, Hungary, Italy, Japan, Portugal, Sene-gal, Spain, Switzerland, Tunisia, Turkey, UK, and USA).Hungary and CELAB has been represented in this net-work by Judit Sándor since 2006.

In November 2012, the annual RUIB workshop washeld in Rio de Janiero. The topic of the workshop was

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Parenthood and Biomedical Interventions. Thethemes of the two workshops will result in two fur-ther books each: first issued in French to be followedby the English versions. All books of the network arepublished in Belgium by Bruylant and all form a partof the series: “Droit, Bioéthique et Société” edited byBrigitte Feuillet-Liger. In 2013, three books came outas a result of our collaboration in previous work-shops. Two books were related to the workshop onthe ethics of end-of-life treatment decisions: one inFrench with the title: Les proches et la fin de viemédicalisé, and one in English with the title Familiesand End-of-Life Treatment Decisions: InternationalPerspective. The chapters of these books analyze thecurrent status and the role of relatives (and non-rela-tives) close to the patient at the end of life.

Another book in French was published in October2013, entitled Corps de la femme et Biomédecine:Approche international, edited by Amel Aouij-Mrad andBrigitte Feuillet-Liger. The English version of this book,containing chapters elaborated at a workshop in 2011that explored the relationship between the female bodyand biomedicine, is expected to be published in early2014 with the title The Female Body: A Journey throughLaw, Culture and Medicine, edited by Thérèse Callus,Brigitte Feuillet-Liger and Kristina Orfali. Many possibi-lities are offered to women through biomedical tech-niques: from assistance to procreate (with assistedreproduction); to refusal to do so (contraception, volun-tary sterilization, termination of pregnancy); to be infor-med of genetic predispositions (through the use of avail-able genetic tests); or to improve their physical appea-rance with cosmetic surgery. But a recurrent questionarises: with its rapid progress and its extreme medical-ization of the body, can biomedicine liberate women? Or

rather, given the risks of the commodification of the bodyor its parts, is it not a source of exploitation? The authorsof this work, jurists, anthropologists, philosophers, soci-ologists and doctors, have explored these questions. Thecontributions from nineteen countries in this interna-tional multidisciplinary study analyze the reality of theamazing developments of biomedicine on the femalebody. Numerous systems are compared for the firsttime; European, African, North and South American, butalso Chinese and Japanese. Beyond highlighting differ-ences, and identifying similarities in the development of‘enhancement medicine’, the ultimate objective of thiswork is to show the complexity surrounding the questionof a woman’s freedom over her body and the extent towhich this is limited by the state. All books within thisproject are published by Bruylant (Brussels).

The upcoming workshop will be held in Brusselsin December 2013.

For more information, please consult: rui-bioethique.univ-rennes1.fr/themes/LavieduRUIB/

22..11..77.. BBiioo--AArrcchhaaeeoollooggiiccaall HHeerriittaaggee PPrroojjeecctt

This is an interdisciplinary research project that intendsto confront the policy and heritage issues arising whenthe search for knowledge sits uncomfortably with whatsociety regards as right and good. The project is based atthe Department of Medieval Studies and involves coop-eration with several CEU programs and research cen-ters: the Department of Medieval Studies (representedby the supervisor of the project, József Laszlovszky, andGerhard Jaritz); the Center for Law and Ethics in Bio-medicine (represented by Judit Sándor); the ReligiousStudies Program (Matthias Riedl), the Jewish StudiesProgram (Carsten Wilke); the Department of History(Katalin Szende and Daniel Ziemann) and the Center forEastern Mediterranean Studies.

The project is based on a network of physicalanthropologists, bioethical and legal experts, scholarsof religious studies and heritage specialists alreadyestablished by an ESF project application by Irene Bar-biera, an alumna of the Department of Medieval Stud-ies who, as a research fellow, coordinates the project inthe form of a CEU 20th Anniversary Postdoctoral Fel-lowship. The project aims to collect academic researchresults related to medieval and early modern humanremains, policy protocols, legal regulations, researchprotocols and guidelines as a repository for working outbest-practice reference materials. In 2013 the project

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2.2. POLICY AND OUTREACH ACTIVITY

22..22..11.. TThhiirrdd EELLPPAATT CCoonnggrreessss:: EEtthhiiccaall,, LLeeggaall aannddPPssyycchhoossoocciiaall AAssppeeccttss ooff TTrraannssppllaannttaattiioonn::GGlloobbaall IIssssuueess,, LLooccaall SSoolluuttiioonnss

An important dissemination event of the recentlyfinalized EULOD project took place in Rotterdam atthe third ELPAT Congress: Ethical, Legal and Psy-chosocial Aspects of Transplantation Global Issues,Local Solutions. The project on living organ dona-tion in Europe was a coordinated action that aimedto establish an inventory of living donation practicesin Europe; to explore and promote living donation as away to increase organ availability; and to develop toolsthat improve the quality and safety of living organ do-

nations throughoutEurope. This actionaims to achievebroad European cov-erage with a specificfocus on the new EUMember States. Itdraws upon the sup-port, knowledge andnetwork of the Euro-pean Platform onEthical, Legal andPsychosocial Aspectsof Organ Transplan-tation (ELPAT) andthe European Societyfor Organ Transplan-tation (ESOT).

In Rotterdam,Judit Sándor pre-

sented the main results of the CELAB team in theEULOD project. Our team argued against the com-mercialization of organ donation and we developed astrong criticism against organ tourism and offeredsome legal solutions for the better enforcement ofexisting legal norms and for enhancing internationalco-operation in this field. Tudor Florea presented aposter prepared by Enikő Demény and himself, titled“The Role of Ethics Committees in Living OrganDonations’ Decision Making Process in Central andEastern Europe.” They based their analysis on empir-ical material acquired during the legal and fieldresearch within the EULOD. They hypothesized thatthe work of the committees involved in living organdonation decision making is influenced by a numberof contextual variables. The question arising out ofthis analysis is whether best practices of such ethicscommittees can be translated from one cultural and

on bio-archeological heritage came to its end. Theresults were discussed at a conference and in the CEUsummer university program (SUN) entitled: “ReadingOld Bodies: New Directions in the Bio-ArchaeologicalHeritage.” The closing conference was held on July 5–6,2013 with the title: “The Bodies of our Ancestors:Ancient Human Remains and the Past in the Future.”

Duration of the project: 2011–2013CELAB participants in the project: Judit Sándor andEnikő Demény

Website: medievalstudies.ceu.hu/projects/ceu-20th-anniversary-postdoctoral-fellowship-to-make-dead-bodies-talk

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legislative context to another, maintaining the samelevel of efficiency and if yes, what would be theaspects of the decision making process where profes-sional guidelines could be of genuine help.

22..22..22.. SSttuuddiieess iinn BBiiooppoolliittiiccss

This year we published anew book in the frame-work of the CELABbook series. This yearthe book was based ona collection of multidis-ciplinary case studieson biopolitical prac-tices and discoursescontributed by politicalscientists and publicpolicy experts, anthro-pologists and philoso-phers, biologists andbioethicists, legalscholars and human

rights activists, as well as advanced graduate stu-dents at the Central European University (CEU). Themajority of the authors have participated in graduatecourses in political science and gender studies atCEU, focusing on the human rights aspects of biopol-itics and the various forms of commercializing thehuman body. This collection of essays reflects notonly the lively discussions we had during CEU cours-es or CELAB events, but also provides interestingcases for further comparative studies on biopolitics.

CELAB Junior Researcher Enikő Demény alsocontributed with a chapter to this book. She started todevelop her interest in social, legal and ethicalaspects of new reproductive technologies since shewas an MA Student at CEU Gender Studies Depart-ment in 1997–1998 Academic Year and attended adirected seminar on this topic conducted by Prof.Judit Sándor. Enikő Demény’s chapter, titled “Medi-cally Assisted Reproduction: Challenges for Regula-tion in Romania,” aims to present the development ofthe regulation regarding medically assisted repro-duction in Romania and its impact on the practice ofassisted reproduction. It will use the method of con-textualization to highlight how the socio-cultural andeconomic context influences the outcomes of a tech-nological application, and how this impacts variouspeople in the given context. It argues that the ongoing

practice of third party reproduction in the RomanianIVF clinics and the illicit activities that are taking placein connection with these procedures in some of theclinics highlight the inadequacies of the existing reg-ulatory framework and call for a comprehensive reg-ulation in the field of medically assisted reproduction.The implications for individuals, family relationshipsor for citizenship of third party reproduction draw ourattention to the broader societal issues involved in theapplication of this medical technology, as well as tothe transnational character of such procedures andpoint to the necessity of a global response to thisissue.

22..22..33.. EEuurrooppeeaann CCoonnffeerreennccee ooff tthhee EEuurrooppeeaann HHeeaalltthhLLaaww AAssssoocciiaattiioonn

One of the key events of this year was the EuropeanConference of the European Health Law Association.The mission of the European Association of HealthLaw (EAHL) is to strengthen the health and humanrights interface throughout Europe, and to serve as anindispensable source of advice and guidance for the

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future of health law and policies in Europe. The guid-ing principle of the EAHL is striving for academicexcellence and the improvement of health law prac-tice. The founding conference was held in 2008 inEdinburgh. This year the Fourth European Conferenceon Health Law took place in Coimbra, Portugal, onOctober 9–11, 2013. The Director of CELAB gave apresentation at this conference with the title: “Accessto Personalized Medicine and the Case and the Caseof Angelina Jolie with the Genetic Test.”

22..22..44.. EEtthhiiccaall TThhiinnkkiinngg:: PPaasstt aanndd PPrreesseenntt IInntteerrnnaa--ttiioonnaall CCoonnffeerreennccee

At this conference held on May 22–23, 2013 in Prešov,Slovakia and organized by UNESCO Chair inBioethics, at the Department of Ethics, Institute ofPhilosophy of Ethics, University of Prešov, EnikőDemény offered a presentation entitled: “The Princi-ple of Vulnerability and its Potential Applications inApplied and Professional Ethics” at the session“Ethics Theories of the 20th Century.” The principle ofvulnerability is a specific to European Bioethics. Incontrast to the four American principles of biomedicalethics—autonomy, non-maleficence, beneficence,and justice—the four of European bioethics and bio-law principles include vulnerability along with auton-omy, dignity, and integrity. According to Rendtorff andKemp (2000, p. 274) “the principle of vulnerability isontologically prior to the other [European] principles,it expresses better than all of the other ethical princi-ples ... the finitude of the human condition.” On theone hand, vulnerability expresses human limits andfrailty; and on the other hand it represents moral andethical action principles. In her presentation EnikőDemény proposed a review of different theoreticalapproaches of the principle of vulnerability and pre-sented case studies on its possible applications.Three fields of application from the CEE context havebeen considered: vulnerability in access to health-care, vulnerability in clinical ethics (example of living

organ donation decision making) and in biomedicalresearch ethics. In conclusion she highlighted somepotential benefits of applying the principle of vulner-ability as well as possible difficulties in its applica-tion.

The conference proceedings will be published inthe international journal Ethics and Bioethics in Cen-tral Europe.

22..22..55.. FFoorrtthhccoommiinngg EEvveennttss:: 2288tthh EEuurrooppeeaann CCoonnffeerr--eennccee oonn PPhhiilloossoopphhyy ooff MMeeddiicciinnee aanndd HHeeaalltthhCCaarree,, BBiiooeetthhiiccss aanndd BBiiooppoolliittiiccss

Péter Kakuk is chairing the organization committeeof the conference that will take place on August27–30, 2014, in Debrecen, Hungary. This event will beorganized by the European Society for Philosophy ofMedicine and Healthcare (ESPMH) and the Depart-ment of Behavioral Sciences, University of Debrecen,Hungary.

‘Biopolitics’ is either used as a philosophical orsociological term referring to the works of Negri,Agamben, Rose, or Foucault, who focused on the con-temporary style of governing populations throughbio-power, or as an umbrella concept referring topublic policies regarding applications of biotechnolo-gy and the life sciences. Both usages suggest thatbiopolitics is a central concept for modern societies.At the same time, bioethics has become increasinglyinterdisciplinary and ever more politicized. Bioethicalissues figure in presidential campaigns and parlia-mentary elections. Bioethicists are advisors for gov-ernments and frame recommendations for publicpolicies. Bioethics and biopolitics have becomedeeply interwoven activities. If bioethics and biopoli-tics are highly interwoven, then how should weunderstand their relationship? Does politics corruptbioethics? How does bioethics affect policy-making?How has bioethics been affected by its role in policy-making?

The event may be followed on the Facebook pagewww.facebook.com/espmh2014

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3. ACADEMIC ACTIVITIES

3.1. PUBLIC LECTURES

Throughout the year 2011, the Central EuropeanUniversity celebrated the twentieth anniversary of itsestablishment with a series of events arranged by thevarious departments and centers of the university.The Center for Ethics and Law in Biomedicine con-tributed with the organization of an Anniversary Lec-ture Series on Bioethics, focusing on the new techno-logical frontiers of life and the social responsibilitiesof life sciences. The lecture series was conceptual-ized and planned during the spring and summer of2011, and generous funding received from the univer-sity allowed CELAB to invite three distinguishedspeakers in the field of European bioethics and med-ical ethics: John Harris, Lord Alliance Professor ofBioethics at the University of Manchester; Inez deBeaufort, professor of health care ethics at the Eras-mus Medical Centre in Rotterdam; and Donna Dick-enson, emeritus professor of medical ethics andhumanities at the University of London.

The lectures, which took place between Septem-ber 30 and October 14, 2011 in the Auditorium of theCentral European University, focused on the ethical,legal, and social implications of recent scientificadvances in the field of life sciences. The three maintopics of the lectures – enhancement of the bodilycapacities, extension of the life span, and commer-cialization of the human body – are all at the core ofethical debates that engage a wide range of disci-plines outside of the life sciences: from philosophy toanthropology, from ethics to law, from gender studiesto public health, among others. After each lecture,and under the moderation of CELAB Director JuditSándor, lively debates and discussions developedbetween the lecturers and the audience that consist-ed of faculty and students from various CEU depart-

ments, as well as associates and research fellowsrepresenting different CEU centers. Detailed informa-tion about these lectures was presented in the CELABAnnual Report 2010–2011. The CELAB Bioethics lec-ture series continued in the 2011–2012 Academic Yearwith a public lecture offered by Prof. Nikolas Rosetitled “Our Brains, Our Selves? The Social Implica-tions of New Brain Sciences.”

33..11..11.. ““BBiiooppoolliittiiccss aanndd BBeeyyoonndd:: VViibbrraanntt MMaatttteerr aannddtthhee PPoolliittiiccaall EEccoonnoommyy ooff LLiiffee”” bbyy PPrrooffeessssoorrTThhoommaass LLeemmkkee

In the academic year of 2012–2013, the CELABPublic Lecture Series continued with a lecturegiven by Professor Thomas Lemke. Prof. Lemke is

Thomas Lemke

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a German sociologist and social theorist. He is bestknown for his work on governamentality, biopoliticsand his readings of Michel Foucault. He is current-ly a Professor of Sociology with specialization inBiotechnologies, Nature and Society at the Facultyof Social Sciences at the Goethe University Frank-furt, Frankfurt am Main, Germany.

The title of the lecture, presented on May 25,2013 was “Biopolitics and Beyond: Vibrant Matterand the Political Economy of Life.” In his lecture,Prof. Lemke critically evaluated two promisingareas of research that have so far received littleattention in the work on biopolitics: the so-callednew materialism, which shifts the accent from“life” to “vibrant matter” (Jane Bennett), and workon “biocapital” that investigates the systematicrelations between (neo-liberal) capitalism, on theone hand, and the emergence of a biotech industrywith new products and services based on biotech-nological knowledge, on the other. The lectureinspired many students and faculty members forfurther debate.

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3.2. TEACHING

CELAB’s staff and fellows are involved in teachingboth at the Central European University and at otheruniversities in Hungary and in other countries of theregion. They offer courses that are in close connec-tion with CELAB’s main fields of inquiry. One ofCELAB’s goals is to develop a teaching network forbioethics and biolaw in the region.

33..22..11.. TTeeaacchhiinngg aatt tthhee CCeennttrraall EEuurrooppeeaann UUnniivveerrssiittyy

Courses offered in the 2012–2013 Academic Year

Judit Sándor

Privacy Rights and Data Protection in Biotechno-logy

Health and Human RightsDepartment of Legal Studies

Human Rights and BiopoliticsDepartment of Political Science and Depart-ment of Gender Studies

The Human Body on the MarketDepartment of Gender Studies

Petra Bárd

EU Constitutional LawEU Criminal Justice Law

Department of Legal Studies

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3.2.2.1. Bioethics Teaching Network

Although as bioethicists we represent a variety ofdisciplines, there are certain truths we hold incommon: (1) that the future of our field rests on thefoundation of bioethics education and (2) ensuringthe strength of this foundation requires a bold look

at where we are now and what future directionsshould be pursued. In April 2010, Cambridge Uni-versity Press held the first Cambridge Consortiumfor Bioethics Education in New York. Leaders in thefield were invited to initiate a shared dialogueaddressing such questions as: Why are we doingthis? What goals are we trying to achieve? Where isbioethics education taking place? How well are wedoing? What next? Tackling those questions andfinding practical answers continues to be the aim ofour subsequent meetings. To date, delegates from29 countries have participated in the CambridgeConsortium and brought their success stories—andchallenges—into teaching bioethics around theworld. Expanding our work together continues aswe focus on “how to” methods of teaching bio-ethics. Through our collective information andshared experiences we are moving forward as aninternational community of bioethics educators.

In the 2012–2013 Academic Year CELAB, repre-sented by Péter Kakuk, CELAB Research Associate,participated in establishing a new network ofbioethics educators: the Hungarian Working Groupof the Cambridge Consortium on Bioethics Educa-tion (BOMM—Bioetika Oktatás MagyarországiMunkacsoportja). Collaborating with the Universityof Debrecen, Department of Behavioral Sciences asa host institution, and joining the international net-work of the Cambridge Consortium on BioethicsEducation, the working group aims to strengthenethics education across the country.

Therefore, it is the organizational objective ofBOMM to establish a Hungarian network for profes-sionals involved in bioethics education, to organize anannual workshop focusing on bioethics education,and to build a web-based platform for our activitiesand interests. In general, the working group’s missionis to improve the quality of bioethics education, todevelop and adapt innovative methods in bioethicseducation, and to preserve and transfer education-related experiences and knowledge to the communi-ty of scholars.

This professional group is open to professionalsworking in the field of bioethics education in institu-

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tions of higher learning. There are more than 30 edu-cators already joined, and we had our first workshopat the University of Debrecen on June 4, 2013.

Webpage: www.mti.deoec.hu/bomm

3.2.2.2. Teaching Bioethics and Biolaw at Other Institutions

Judit Sándor

Riga University, LatviaSummer Course on European Health Law &EthicsERASMUS Lifelong Learning ProgrammeJune 17–28, 2013, Riga, Latvia

Petra Bárd

ELTE Faculty of Law, Criminology MA ProgramCriminal PolicyData Protection

“Mediation’s Place in Restorative Justice Regimes”Mediation Summer School, CEUJune 7, 2013, Budapest, Hungary

“Freedom of Expression, Right to Privacy, Enforce-ment of ECtHR Judgments”Co-lecturing with Austrian Constitutional CourtJustice Christoph Grabenwarter and chairing asession on EU accession to the ECHREuropean Forum Alpbach 2013: Experiencesand Values, Seminar 09: The Role of the Euro-pean Court of Human Rights in Protecting andDeveloping an Open SocietyAugust 13–16, 2013

“EU Internal Market and External Relations” and“Fundamental Rights Protection in the EU”Two lectures held at the ASSEI Alpbach Sum-mer School on European Integration, Club Alp-bach BelgradeSeptember 12–21, 2013, Belgrade, Serbia

“European Judicial Training Collective”Training of Irish and Hungarian judges onbehalf of CEU in cooperation with the LawSociety of IrelandOctober 19–21, 2013

“International Cooperation in Criminal Justice”Lecture held at the Supreme Court/GeneralPublic Prosecutor’s OfficeDecember 9, 2013, Budapest, Hungary

“European Standards of Criminal Policy”Guest lecture held at Eötvös Loránd University(ELTE)December 12, 2013, Budapest, Hungary

“The EU Accession to the ECHR: Influence onFuture Case-Law”Public lecture organized by the InterdisciplinaryAssociation of Comparative and Private Interna-tional Law at Juridikum, ViennaDecember 16, 2013, Vienna, Austria

Violeta Beširević

Medical Law Courses at Union University LawSchool, Belgrade, SerbiaLaw and Ethics in Biomedicine (SpecializedStudies in Medical Law)Patients’ Rights (Specialized Studies in MedicalLaw)On sabbatical leave in 2012–2013

Péter Kakuk

Bioethics Courses at University of Debrecen, Medicaland Health Science Centre, Debrecen, HungaryBioethics course, General Medical Program (inHungarian and English)Bioethical Cases (in Hungarian and English)Bioethics & Dental Ethics course, DentistryProgram (in Hungarian and English)Bioethics course, for Medical Diagnostic Labo-ratory Analysts

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Ethics in Pharmacy course (in Hungarian andEnglish)Research Ethics: RCR education (in Hungarianand English)Ethical issues in health care managementcourse, Postgraduate Program for Health CareManagementSelected issues in bioethics, for PhD students

József Kovács

“Reason-Centered Personality Development I–II.”Postgraduate lecture delivered on the MSccourse at the Pázmány Péter Catholic Universi-ty Philosophical PracticeSeptember 28, 2012, Piliscsaba, Hungary

“Reason-Centered Personality Development III.”Postgraduate lecture delivered on the MSccourse at the Pázmány Péter Catholic Universi-ty Philosophical PracticeNovember 17, 2012, Piliscsaba, Hungary

“Ethical Questions in Psychotherapy”Lecture held for clinical psychologists in post-graduate training (grade 2), organized by theDepartment of Clinical Psychology of the Sem-melweis UniversityFebruary 11, 2013, Budapest, Hungary

“Ethical and Legal Principles of Informed Con-sent” Lecture held at the CME course InformationDisclosure and Consent in Everyday MedicalPractice—from an Ethical and Legal Point ofView, Semmelweis UniversityFebruary 15, 2013, Budapest, Hungary

“Ethical Questions of Competency”Lecture held at the CME course Information

Disclosure and Consent in Everyday MedicalPractice—from an Ethical and Legal Point ofView, Semmelweis UniversityFebruary 16, 2013, Budapest, Hungary

“Psychologist Ethics and Ethical Questions in Psy-chotherapy”Lecture held for clinical psychologists in post-graduate training, organized by the Departmentof Clinical Psychology of the Semmelweis Uni-versityMarch 22, 2013, Budapest, Hungary

“Patients Rights from a Bioethical Point of View”Lecture held in the framework of lecturesseries organized by Semmelweis University andEDUVITAL Nonprofit Society for Health Educa-tionApril 26, 2013, Budapest, Hungary

“Ethical Questions of Psychotherapy”Lecture held for the compulsory training coursefor psychotherapists New, Evidence BasedKnowledge in the Field of PsychotherapeuticPractice and ResearchNovember 22, 2013, Budapest, Hungary

Imre Szebik

Semmeweis University, Budapest, HungaryBioethics for Medical StudentsResearch Ethics, Lectures in Continuous Medi-cal Education (CME) courses for physicians(February and September, 2013)Lectures and seminars in the Hungarian, Ger-man and English language programs

Evangelical-Lutheran Theological University,Budapest, HungaryBioethics

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4. RESEARCH FELLOWS

In the 2012–2013 Academic Year CELAB hosted twoResearch Fellows: Imre Bárd and László Fosztó

LÁSZLÓ FOSZTÓ

LLáásszzllóó FFoosszzttóó was a VisitingResearch Fellow at theCELAB in his capacity as apostdoctoral Researcher atthe Centre for Ethics inHealth Politics, Grigore T.Popa University of Medicine and Pharmacy, Iaşi,between December 2012 and March 2013. The topic ofhis research was “Ethical Issues in Recent Researchon the Health of the Roma Population in EasternEurope.”

László Fosztó has been a researcher at the Ro-manian Institute for Research on National Minori-ties (www.ispmn.gov.ro) since its establishment in2007. He is an ethnographer and social anthropolo-gist trained at the Babeş-Bolyai University of Cluj,Romania (BA 1996), Central European University inBudapest, Hungary (MA 2001), and the Max PlanckInstitute for Social Anthropology in Halle/Saale(PhD 2009), Germany. His training and interest en-compass both ‘western’ and ‘eastern’ traditions ofethnological research. He has been doing researchamong different Roma/Gypsy groups in Transylvaniasince 1993. The fields of research he has con-tributed to are: the study of relations between Hun-garians and Roma in Transylvanian villages, theethnography of communicative practices, the

anthropology of religion, particularly ritual revital-ization after socialism, and religious conversionamong the Roma. Additionally, he is interested inthe political movement of the Roma in Europe andissues of social identities, including stigma, ethnic-ity, diaspora, and nationalism. More recently, hestarted research on the local impact of the migra-tion processes and broader issues of economicanthropology (informal economy, social capital, rit-ual and consumption).

He authored two volumes Ritual Revitalizationafter Socialism: Community, Personhood, and Con-version among the Roma in a Transylvanian Village,Halle Studies in the Anthropology of Eurasia, Volume21 (Münster: LIT Verlang, 2009) and Colecţie de studiidespre romii din România, Editura Institutului pentruStudierea Problemelor Minorităţilor Naţionale – Edi-tura Kriterion, Cluj-Napoca 2009. His other recentpublications include: “Pentecostalism in Romania.The Impact of Pentecostal Communities on the Life-Style of the Members” (co-authored with Dénes Kiss),La ricerca folklorica, 65 (La sfida del pentecostalis-mo), pp. 51–64; and “Mobilising ‘Culture’ and ‘Reli-gion’: Ritual Practices and Social Relations amongTwo Minority Groups in Rural Transylvania,” Sociolo-gie Românească, 01/2010, pp. 132–145. He co-editedvolumes: Twenty Years After the Fall of Official Athe-ism: The Contemporary Romanian Religious Land-scape, Thematic Issue: Studia Universitatis Babeş-Bolyai: Sociologia, Vol. (LIV): 2, December 2009 (co-editors: Mălina Voicu and Sorin Gog) and Spectrum.Cercetări sociale despre romi, Editura Institutuluipentru Studierea Problemelor Minorităţilor Naţionale– Editura Kriterion, Cluj-Napoca 2011 (co-editor: Ste-fánia Toma).

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During his stay at the at the CELAB László Fosztóworked on studying the intersection of ethical prob-lems related to research on the health of the Romapopulation in Eastern Europe and issues of ethics inhealth politics with particular focus on Romania. Heworked on two studies on this topic: Social researchand Community Development in Roma communities,notes on the issues of ‘vulnerability’ and ‘empower-ment’ and Ethical issues in recent medical researchon the health of the Roma population. The CELABresources and the Library of the Central EuropeanUniversity offered excellent conditions for developingthese studies.

IMRE BÁRD

Imre Bárd is a PhD studentat the London School of Eco-nomics & Political Sciencewhere he also works as aResearch Officer. He was aVisiting Fellow at CELAB between April and Decem-ber 2013. He actively contributed to the work of theFP7 project NERRI (Neuro-Enhancement: Responsi-ble Research and Innovation) that both CELAB andthe LSE are involved in. The project seeks to initiateEurope-wide societal engagement around the social,legal and ethical challenges related to neuro-enhancement technologies. In particular, he workedwith Prof. Judit Sándor on conducting a series of

expert interviews and planning stakeholder eventsfor 2014.

During his time at CELAB, Imre Bárd also workedon writing up publications: an invited chapter forSpringer’s forthcoming Handbook of Neuroethics,discussing ethical issues in novel brain-computerinterfaces and their use in children with attention-deficit hyperactivity disorder (ADHD), a surveypaper about students’ use of cognition enhancingdrugs in the United Kingdom, and a focus groupstudy examining students’ perceptions of the ethi-cal issues related to cognition enhancement withinacademic environments.

In January 2013 Imre Bárd gave an evening talkabout ethical issues related to human enhancementat the ‘Virus Club’, a highly popular weekly event incentral Budapest that presents various topics of sci-entific or cultural significance to an interested gener-al audience.

In July of 2013 Imre participated at Yale Universi-ty’s Summer Bioethics Institute where he learnedmore about neuroethics, bioethics in the context ofUS law, as well as the relationship between bioethicalissues and different religious traditions. He also gavea presentation about the NERRI Project to studentsand faculty at Yale’s Bioethics Center, and he hasbeen invited to return in 2014 to hold a four-week aseminar on the ethics of human enhancement.

Imre sought to make the most of the resources atCELAB, he had many discussions with faculty and fel-lows at the Centre and he attended numerous CEUevents, including the CELAB public lecture by ThomasLemke.

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During the 2012–2013 Academic Year, CELAB staffand fellows took part in the following academic andscientific events:

New Perspectives on Gamete and Embryo Donation:Ethics, Kinship and Citizenship in a Globalized WorldEuropean Science Foundation Exploratory Work-shopPresentation by Judit Sándor on “Kinship andGamete Donation: How Far Can Courts Go?”Presentation by Enikő Demény on “Networks ofReproduction in the Globalized World“September 11–12, 2012, Essex, United Kingdom

Eighth National Conference on BioethicsOrganized by the Romanian Society of Bioethics;the Romanian College of Physicians; the Centerfor Health Policy and Ethics at the Grigore T. PopaUniversity of Medicine and Pharmacy, Iaşi; theCenter of Ethics at the Babeş-Bolyai University,Cluj-Napoca; and the UNESCO National Commis-sion of Bioethics, RomaniaPresentation by Adina Rebeleanu (with MihaelaFrunză and Enikő Demény) on “Vulnerability in theReforming Health Systems Process—Legal vs.Ethical Perspectives”Presentation by Mihaela Frunză (with Enikő Demény,Judit Sándor, Beatrice Ioan) on “Ethical Perspectiveson Facebook Organ Donation Campaing”September 13–16, 2012, Cluj, Romania

Comparative Embryonic Stem Cell Research inMammaliansYearly Open Workshop of the Partners in FP7 proj-ectParticipant: Judit SándorSeptember 25, 2012, Budapest, Hungary

PR Trend. New Media, Challenges and Perspec-tives—International ConferencePresentation by Mihaela Frunză, Enikő Demény,Judit Sándor, Beatrice Ioan on “Ethical Challengesof the Facebook Campaign in Promoting OrganDonation”October 19–20, 2012, Cluj, Romania

Les incidences de la biomédecine sur la parenté[The Influence of Biomedicine on Kinship Rela-tions]Workshop organized by the International Academ-ic Network on Bioethics (RUIB)Presentation by Judit Sándor on “The Transforma-tion of Families and new Biomedical Technology inHungary”October 29–30, 2012, Rio de Janeiro, Brazil

Embedding Ethics in Scientific PracticeExpert Meeting at the Hungarian Academy ofSciencesParticipant: Judit SándorNovember 6–7, 2012, Budapest, Hungary

5. EVENTS AND ACHIEVEMENTS

5.1. PARTICIPATION IN CONFERENCES

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Meeting of the Hungarian Skeptic SocietyPublic lecture held by Imre Szebik on “Evidence-Based Medicine and Obstetrics”November 18, 2012, Budapest, Hungary

EpiHealth Project Steering Committee MeetingRoundtable participant: Judit Sándor as Memberof the Ethics Advisory BoardNovember 22, 2012, Gödöllő, Hungary

TILEC-EUR Health WorkshopPresentation by Mária Éva Földes on “Informationto Patients on Medicinal Products and MedicalDevices: EU Law Developments”December 7, 2012, Tilburg, the Netherlands

Bioehics & Genetics: Dilemmas of Genetic Diagnosisand ConsultationConference organized by the Bioethics Committeeof the Polish Academy of Sciences; the Institute ofPhilosophy of the University of Warsaw; and theeditorial board of the scientific Journal EthicsKeynote Speakers: Prof. Sřren Holm, University ofManchester, UK and University of Oslo, Norwayand Prof. Judit Sándor, Central European Univer-sity, Budapest, HungaryDecember 7–8, 2012, Warsaw, Poland

Ethical Aspects of Exome and Whole GenomeSequencing Studies in Rare Diseases WorkshopPresentation by Judit Sándor on “Ethical Aspectsof Informed Consent”January 14, 2013, Tel Aviv, Israel

18th Meeting of the Hungarian Society for PsychiatryPresentation by József Kovács on “Some CurrentIssues in Neuro-ethics”January 23-26, 2013, Győr, Hungary

Revision of Medical Devices Regulation - The LegalChallengesorganized by the Tilburg Law and Economics Cen-ter (TILEC), Lexxion the Legal Publisher, AXONScience-based lawyers and EucomedParticipant: Éva Földes, co-organizerJanuary 29, 2013, Tilburg, the Netherlands

NERRI Project Kick-off MeetingCELAB participants: Judit Sándor and MártonVarjúMarch 25, 2013, Cascais, Portugal

Time to Live, Time to DieConference of the Faculty of Theology, Universityof DebrecenPublic Lecture held by Imre Szebik on “EthicalIssues at the End of Life”April 12, 2013, Debrecen, Hungary

XVII. Pszinapszis-Budapest Psychology Days

Presentation by Enikő Demény on “The Impact ofNew Technologies on Identity and the Family”April 13, 2013, Budapest, Hungary

14th Schizophrenia AcademyPresentation by József Kovács on “Current Issuesin Neuro-ethics” April 19, 2013, Budapest, Hungary

Third ELPAT Congress: Ethical, Legal and Psychoso-cial Aspects of Transplantation Global Issues,Local SolutionsPresentation by Judit Sándor on “Final results ofthe CELAB team in the EULOD project” Poster presentation by Enikő Demény and GeorgeTudor Florea poster presentation on “The Role ofEthics Committees in Living Organ Donations’Decision Making Process in Central and EasternEurope”April 20–23, 2013, Rotterdam, The Netherlands

COST IS1201, Disaster BioethicsScientific Kick-off MeetingParticipant: Péter KakukApril 25–26, 2013, Dublin, Ireland

Third World Conference on Research Integrity Presentation by Péter Kakuk on “Fostering scien-tific integrity and assessing the hidden curricu-lum”May 5–6, 2013, Montreal, Canada

Equal Opportunities for Health: Action for Develop-ment CELAB participant: Enikő DeményMay 16–17, 2013, Braşov, Romania

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Ethical Thinking: Past and Present Organized by UNESCO Chair in Bioethics, Department of Ethics, Institute of Philosophyof Ethics at the University of PrešovPresentation by Enikő Demény on “ThePrinciple of Vulnerability and its Potential Applications in Applied and Professional Ethics”,presented at the Session: Ethics Theories of the20th CenturyMay 22–23, 2013, Prešov, Slovakia

Nephrology DaysPresentation by Péter Kakuk on “The Refusal ofDialysis at End-stage Renal Failure”May 31, 2013, Debrecen, Hungary

First Meeting of the Hungarian Working Group of theCambridge Consortium on Bioethics Education(BOMM)Presentation by József Kovács on “The Present ofBioethics Education”Presentation by Imre Szebik on “Challenges ofBioethics Education”June 4, 2013, Debrecen, Hungary

Third Conference of Applied EthicsKeynote address given by Imre Szebik on “EthicalQuestions of Gene Transfer Techniques”June 8, 2013, Cluj, Romania

Summer Course on European Health Law & EthicsERASMUS Lifelong Learning ProgrammeParticipant: Judit Sándor June 17–28, 2013, Riga, Latvia

Third Cambridge Consortium for Bioethics Educa-tionPresentation by Péter Kakuk on “TeachingResponsible Conduct to Life Scientists”Participant: Imre SzebikJune 19–21, 2013, Paris, France

Galilee Colloquium VII. on Social, Moral and LegalPhilosophyEstablished by the Swiss-Israel Philosophy Foun-dationPresentation by Judit Sándor on “Novel Rights-Based Approaches to Selective Reproduction”June 19–23, 2013, Kibbutz Kfar Blum, Israel

Starpoint Reformed Youth FestivalRoundtable discussion with the participation ofImre Szebik on “Ethical Issues of Human Infertility”July 24, 2013, Mezőtúr, Hungary

Valley of Arts FestivalPublic lecture held by Imre Szebik on “EthicalIssues of Human Reproduction”July 29, 2013, Kapolcs, Hungary

27th European Conference on Philosophy ofMedicine and Health Care. “Innovation in HealthCare and the Life Sciences”Presentation by Péter Kakuk on “Innovation Cul-ture and Mertonian Norms: Tensions in the Ethicsof Scientific Publication”August 14–17, 2013, Basel, Switzerland

Thirteenth Annual Conference of European Societyof Criminology, Budapest, HungaryBeyond Punitiveness: Crime and Crime Control inEurope in a Comparative PerspectivePetra Bárd organized and chaired the roundtablediscussion on an emerging EU criminal justiceand policySeptember 5, 2013, Budapest, Hungary

The First Conference on Tackling Health Inequalitiesin Europe - Through Human Resource CapacityBuilding: “Does the Higher Education System inthe EU Respond to the Need for Ethnic MinoritySensitive Health Assistance?”Co-organized by the Medical School of the Univer-sity of Pécs and the Open Society Foundation Co-organizer and participant: Éva FöldesSeptember 7, 2013, Pécs, Hungary

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A Roundtable on the Implications of the Snowden LeaksOrganized by the Human Rights Initiative, with theparticipation of Petra Bárd, Tamás Bodoky (Atlat-szo.hu) and Kate Coyer (CEU CMCS)See www.ceu.hu/event/2013-10-02/roundtable-implications-snowden-leaks#sthash.glDfC0sH.dpufOctober 2, 2013, Budapest, Hungary

Le droit constitutionnel national aux prises avec ledroit européen: l’exemple de la Hongrie [NationalConstitutional Law Dealing with European Law:The Example of Hungary]Conference held at the Université de StrasbourgLecture by Petra Bárd on “L’évolution constitu-tionnelle récente de la République de Hongrie”October 4, 2013, Strasbourg, France

Fourth European Conference on Health LawPresentation by Judit Sándor “Access to Personal-ized Medicine and the Case of Angelina Jolie withthe Genetic Test”October 9–11, 2013, Coimbra, Portugal

European Health Forum GasteinParticipant: Éva Földes as expert invited by theEuropean CommissionOctober 2–5, 2013, Bad Hofgastein, Austria

Disaster BioethicsWorkshop Conference “Veterans’ Voices”Participant: Péter KakukOctober 14–17, 2013, Tel-Aviv, Israel

Conference on EU Accession to the ECHRLecture held by Petra Bárd on “The ForeseeableChanges in the ECtHR’s EU Law Related Case-Law as a Consequence of EU Accession to theECHR” at the Masaryk University in BrnoOctober 15, 2013, Brno, Czech Republic

Meeting of the Hungarian Skeptic SocietyPublic lecture held by Imre Szebik on “Ethical andCritical Remarks on Evidence Based Medicine”October 15, 2013, Budapest, Hungary

Annual Conference of the Hungarian Society forArtificial NutritionPresentation by Imre Szebik on “Ethical Issues ofArtificial Nutrition and Hydration”November 8, 20