CVs of the speakers and chairs, in order of appearance, and CVs of the Group members

The Group consisted of 14 experts, including the Chairperson and Rapporteur, with representatives from civil society (consumer, patient and medical groups), industry and scientific experts in the fields of genetics, ethics and law.

CVs

Achilleas Mitsos
European Commission, Director-General, Research DG

Achilleas Mitsos, of Greek nationality, was appointed as the Director-General of the Research Directorate-General at the European Commission in June 2000. After completing studies at the Athens School for Economics and Business Sciences in 1970, he studied in the United States and obtained a M.A. and a Ph.D in Economics at the University of Pittsburgh, (Pennsylvania).

Back in Greece, he became Head of Department on European Community issues at the Bank of Greece and was advisor at the Ministry for Foreign Affairs while teaching on a temporary appointment as professor of International Economics at the Department of Economics at the University of Athens.

From 1985 to 1988 he was Head of Cabinet for Mr Varfis, Member of the Commission of the European Communities responsible for the coordination of structural policies and consumer protection.

From 1988 to 2000, he held various positions at the European Commission as Director at the Directorate-General for Coordination of Structural Funds, Director for Vocational Training, at the Directorate-General for Education, Training and Youth, and Director for Human Potential at the Research Directorate-General. He is also the author of many articles and three books (in Greek) on international economics and European integration. He has been giving a series of lectures, seminars etc on European issues in various European universities.

Achilleas Mitsos is a Visiting Professor at the London School of Economics and Political Science.

Eryl McNally, UK
Chair, STRATA Expert Group
Member of the European Parliament

Eryl McNally is an MEP for the East of England region. She was first elected in 1994. Since 1999, she has been the Socialist group coordinator on the Industry, External Trade, Research and Energy committee, having previously been vice-president of the Research, Technological Development and Energy Committee. Her policy interests include world trade, energy and environmental issues (especially renewable energy), and research policy. Eryl McNally is currently the first vice-president of the European Parliament's Scientific and Technological Options Assessment (STOA) and was actively involved in the Parliament's contribution to the European Union's Sixth Framework Programme for Research and Technological Development, and in particular the promotion of Science and Society. Her work in this field included being rapporteur for the Women and Science report. Mrs McNally was also a member of the D'Avignon high-level group on the future of the Joint Research Centre. More recently, she has been a member of the Commission-led “Group of Personalities” looking at the creation of a programme for security-related research.

Hélène Tack, France

Hélène Tack’s role within the Group has been to represent patients directly concerned by genetically transmitted diseases. She is 37 years old, married and has had five children. She lost her first two children due to a serious genetic disease but was able to benefit from pre-natal genetic tests available at the time and as a result, she now has three healthy children.

For the last ten years she has been working with the Association Française contre les Myopathies (French muscular dystrophy association) and has been in regular contact with many families concerned by genetic tests. She feels very strongly about the necessity to reflect on and understand genetic tests so as to be better prepared to accompany the families in their choice, whatever that might be. This is the reason why she chose to be a part of the Expert Group.

Bill Albert

Dr. Bill Albert is chair of the Bioethics Committee of Disabled Peoples’ International Europe. He took the lead in developing the organisation’s position paper, Disabled People Speak on the New Genetics (http://www.dpieurope.org/). He is also a member of the UK Government’s Human Genetics Commission (http://www.hgc.gov.uk/) . He chairs the Commission’s working group on genetic discrimination, which considers issues around the uses of genetic information by insurance companies and employers.

Klaus Lindpaintner, Austria
Roche Genetics and Roche Center for Medical Genomics

Professor Lindpaintner’s background is in clinical and investigative medicine, in clinical and molecular genetics, and in public health/epidemiology. He has spent the bulk of his time at F. Hoffmann-La Roche setting up mechanisms to implement the use of genomics, genetics, and proteomics, as it applies to pharmaceutical and diagnostics discovery and development in common complex disease indications. In doing so, he has been involved in the ethical, legal, and sociological issues raised by DNA-testing and related issues on an almost daily basis over the last four years. Internally, this led to his drafting and getting approval by the company’s Board of Directors of a “Roche Charter on Genetics” that endorses the principles of autonomy, beneficence, non-maleficence, and justice, as well as of solidarity and altruism. Subsequently, he initiated the appointment of an external “Science and Ethics Advisory Group” that counsels the company in matters related to ethical and legal implications of using DNA-testing in its clinical research and that also features representation by the lay community.

Over the last years he has frequently been involved in committees and official advisory groups that have focused on genetic testing and related issues. He is a member of WHO’s CIOMS workgroup on pharmacogenetics, a delegate to the EuropaBio Ethics committee, a member of the Nuffield Council on Bioethics’ Pharmacogenetics Round Table, he has served as a consultant to the Nationale Ethikrat in Germany, and has testified before the European Parliament’s Temporary Committee on Human Genetics and New Technologies in Medicine.

John Harris
University of Manchester

Professor John Harris FMedSci., B.A., D.Phil Sir David Alliance Professor of Bioethics Institute of Medicine, Law and Bioethics University of Manchester. John Harris was elected a Fellow of the United Kingdom Academy of Medical Sciences (FMedSci) in 2001, the first philosopher to have been elected to Fellowship of this new National Academy which was established to serve “the medical sciences in the same way as the Royal Society serves the natural sciences (and) the British Academy serves the humanities”. He has been a member of The United Kingdom Human Genetics Commission since its foundation in 1999. John Harris is the author or editor of fourteen books and over one hundred and fifty papers. Recent publications include: Clones Genes and Immortality. Oxford University Press, 1998. pp 320, John Harris and Søren Holm Eds, The Future of Human Reproduction Clarendon Press, Oxford, 1998, pp 254, John Harris Ed. Bioethics. Oxford Readings in Philosophy Series, Oxford University Press. 2001. pp 557, Justine C. Burley and John Harris Eds. A Companion To Genetics: philosophy and the genetic revolution. Basil Blackwell, Oxford. 2002. (Blackwell’s Companions to Philosophy series). pp 489., On Cloning, Routledge 2004.

Anne Cambon-Thomsen, France
Rapporteur, STRATA Expert Group
INSERM, Toulouse

Based at Inserm Unit 558 (National Institute of Health and Medical Research) in Toulouse, France, Dr Thomsen is a Director of Research at the CNRS (National Centre for Scientific Research) and leads a multidisciplinary team on “Genomics, Health, Society”, involving human and social sciences in the context of research in epidemiology and public health. She has an MD, a masters degree in Human Biology and a degree in Health Ethics. She also leads the “Genetics and Society” branch of the Toulouse Genopole. Her topics of research encompass human immunogenetics, transplantation, genetic epidemiology of autoimmune diseases, population genetics and ethics in genetics. From 1985 – 1997 she directed several research units in these fields.

Dr Cambon-Thomsen is the author of 140 publications and 90 chapters and reports. She is a member of the Advisory Committee for Priority 1 (Genomics and Biotechnology for Health) of the European Union’s 6th Framework Programme in Research and Technological Development and of the advisory scientific board of Genome Quebec. She is involved in a number of activities in ethics of health and research. She has been involved in the ethical evaluation of the EU 5th Framework Programme projects and a member of an international jury for a “Society and Genomics” centre in the Netherlands. She is a member of the CCNE (French National Advisory Bioethics Committee) and has been a member of other ethics committees in research and hospitals.

Detlef Niese, Germany
Novartis Pharma

Priv. Doz. Dr. med. Detlef Niese is head of External Relations in Clinical Development and Medical Affairs, Novartis Pharma in Basel. Dr.Niese is a licensed pharmacist and physician and obtained a research-based doctoral degree from the Faculty of Medicine, University of Bonn, Germany. He joined industry (Sandoz AG Basel, Switzerland) in 1992 as a Senior Clinical Research Physician and held positions of increasing responsibility in Clinical R&D in Transplantation, Dermatology and Infectious Diseases until joining the Clinical Development management team in 2001. Dr Niese was involved in programmes on organ and cell transplantation (including genetically modified cells), tissue-engineered skin replacement, growth factors and xenotransplantation for solid organs, bone and cells.

Before specialising in Internal Medicine and Clinical Immunology he worked for four years as a research fellow in immunogenetics. Between 1980 and 1992 he headed Clinical Immunology and Clinical Pathology at the Department of Internal Medicine, University Hospital in Bonn, Germany providing clinical (in- and outpatient) and laboratory services. He also served as a consultant for immunosuppressive therapy to the University and to major regional hospitals. His primary research interests were the structure and genetics of the MHC in man, MHC and disease, autoimmunity and immunodeficiency, specifically in chronic renal failure as well as in HIV infection. Since 1991, Dr.Niese has been a member of the Faculty of Medicine of the University of Bonn, Germany.

Jaanus Pikani, Estonia
Estonian Genome Foundation

Dr Jaanus Pikani is chairman of the Estonian Genome Foundation – a NGO that initiated the Estonian Genome Project, a population based health and genome data collection in Estonia. Responding to the initiative Estonian parliament approved in 2000 special law enabling large scale genomic data collection. Jaanus Pikani has been working more than 10 years as a cancer and reconstructive surgeon. From 1994 he was in different areas of public service (secretary general of the Ministry of Social Affairs, Chief of Staff Estonian President). In 1998 he was appointed as CEO of Tartu University Clinics to conduct a merger of 15 different organisations to the biggest hospital in Estonia. As being among the initiators and architects of the Estonian Genome Project, Jaanus Pikani has followed closely international developments in various aspects of health and genome data collection. Dr Pikani is also a founder of the Estonian biotech company Asper Biotech and serving on the board of the Estonian Biotechnology Association. He is also member of the ScanBalt Steering Committee.

Henriette Roscam Abbing, Netherlands
Ministry of Health

Prof. Dr. Roscam Abbing studied law at the University of Utrecht in the Netherlands Her thesis dealt with international organisations in Europe and the right to healthcare. She is a legal counsellor to the minister of health, on Health Law and Public Health issues and a part-time professor of health law at the University of Utrecht.

Previously, she worked at the Council of Europe Health Division in Strasbourg. She is now the representative of the Ministry of Health at the European Health Committee of the Council of Europe. She also participates in the work of the Committee on Bioethics of the Council of Europe and its working group preparing a protocol on genetics. She is co-author of a draft legal instrument on the use of human biological materials and personal data in biomedical research, also for the Council of Europe.

Prof. Dr. Roscam Abbing is co-editor of the Dutch Journal on Health Law as well as of the European Journal of Health Law and a member of the international advisory board of the Medical Law Review (UK). She is also a member of the Dutch Health Council, the scientific advisory board on health matters to the minister of health. Her present activities concentrate on biotechnology, screening and genetics from the perspective of the inter-relation between public health, society and law.

Jan Helge Solbakk, Norway
University of Oslo

Professor Solbakk trained as a physician and a theologian and also holds a Ph.D in ancient philosophy. Until 1995, he served as Director of the National Committee of Medical Research Ethics in Norway. He is currently Director and Professor of medical ethics at the Centre for Medical Ethics, Faculty of Medicine, University of Oslo. He is also adjunct professor of philosophy of medicine and medical ethics at the Centre for International Health, Faculty of Medicine, University of Bergen. His fields of research are medical ethics, research ethics, philosophy of medicine and ancient philosophy, literature and medicine. He is in charge of a European research project on Research Biobanks and Health Registries. Since 1998 he has served as a member of the CDBI-CO-GT4, a Working Party on human genetics at the Council of Europe. In 1999, he served as a member of an expert committee on genetic therapy set up by the Norwegian Centre for Health Technology Assessment. From 1999-2000 he was chairman of a working party set up by the Ministry of Health and Social Affairs in Norway to issue a report on stem cell therapy. He has been a member of the Norwegian Biotechnology Advisory Board since 2000.

Prof. Arthur Caplan

Emmanuel and Robert Hart Professor of Bioethics, Chair of the Department of Medical Ethics and the Director of the Center for Bioethics at the University of Pennsylvania in Philadelphia.

Prior to coming to Penn in 1994, he taught at the University of Minnesota, the University of Pittsburgh, and Columbia University. He was the Associate Director of the Hastings Center from 1984-1987.

Caplan is the author or editor of twenty-five books and over 500 papers in refereed journals of medicine, science, philosophy, bioethics and health policy.

Caplan has served on a number of national and international committees including as the Chair of the Advisory Committee to the United Nations on Human Cloning, the Chair of the Advisory Committee to the Department of Health and Human Services on Blood Safety and Availability, a member of the Presidential Advisory Committee on Gulf War Illnesses, the special advisory committee to the International Olympic Committee on genetics and gene therapy and the special advisory panel to the National Institutes of Mental Health on human experimentation on vulnerable subjects.

Philippe Busquin
Commissioner for Research

Philippe Busquin is Member of the European Commission, in charge of Research and Development, since September 1999.

During his political career, he has been, since 1980, minister in different departments at different levels in Belgium, including in education, internal affairs, budget, energy and social affairs. He was elected as a Member of the European Parliament in 1999. Between 1992 and 1999, he was president of the francophone Socialist Party and Vice-President of the Socialist International. Philippe Busquin is a Minister of State since 1992.

After accomplishing his studies in Physics as the Free University of Brussels in 1962, Philippe Busquin obtained additional degrees in philosophy and in environmental sciences. Between 1962 and 1977, he was researcher and assistant in Physics at the Faculty of Medicine at the Free University of Brussels and taught at the Graduate School in Nivelles, Belgium. Between 1978 and 1980, he was president of the Board of the IRE (Institute for Radioelements).

Alex Capron
World Health Organisation (WHO)

Alex Capron is the first Director of Ethics, Trade, Human Rights and Health Law at the World Health Organization, Geneva, Switzerland. He joined WHO in October 2002 to establish the ethics and health unit in the Director General’s Office. He previously taught law, medicine, and ethics at Georgetown, Pennsylvania, Yale and most recently at the University of Southern California where he was University Professor, Henry W. Bruce Professor of Equity, Professor of Law and Medicine, and Co-Director of the Pacific Center for Health Policy and Ethics. From September 1979 to March 1983 he served as the Executive Director of the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Prof. Capron, who earned his LL.B. at Yale University and B.A. (High Honors) from Swarthmore College, specializes in health policy and medical ethics. He has written or edited eight books, including Law, Science and Medicine and the Treatise on Health Care Law.

Alastair Kent, UK
Genetic Interest Group

Alastair Kent is Director of the Genetic Interest Group (GIG) - the UK alliance of charities and support groups for people affected by genetic disorders. GIG's mission is to promote the development of the scientific understanding of genetics and the part that genetic factors play in health and disease, and to see the speedy transfer of this new knowledge into improved services and support for the treatment of currently incurable conditions.

Prior to joining GIG, Alastair worked for a number of voluntary organisations on issues concerning policy, service development and disabled people.

Rainer Gerold
European Commission, director “Science & Society”, Research DG

Rainer Gerold is in charge of the directorate "Science and Society". He has been working for the European Commission's Directorate General 'Science, Research and Development' since 1982. Between 1982 and 1992 he was director responsible for budget and personnel and research contracts. From 1992 to 1998 he has been the director responsible for co-operation with third countries and international organisations. In 1999 and 2000 he lead the directorate 'Life Sciences I'.

Rainer Gerold studied law and economics at the University of Bonn and obtained his PhD in international law. He has been working at the Oberlandesgericht (regional court of appeal) in Cologne from 1965 to 1969. In 1970 he joined the Federal Ministry for Research and Technology in Bonn where he became assistant to the State Secretary (1972-1974). In 1974 he moved to CERN in Geneva, to take up a position as assistant to the Director General Sir John Adams while at the same time fulfilling the role of secretary of the CERN directorate. In 1978 he became administrative director of the GSF (National Research Centre for Environment and Health) in Munich and remained there until 1982, when he moved to the European Commission.

Erik Wendel, Denmark
European Patient Voice

Professor Dr. h.c. Ludger Honnefelder

Professor em. of Philosophy at the University of Bonn. Since 1992 he is a member of the Northrhine-Westphalian Academy of Sciences and since 1998 also of the Standing Committee “Science & Ethics” of All European Academies (ALLEA). Professor Honnefelder is Director of the Department of Biomedical Ethics, Institut für Wissenschaft und Ethik (since 1993) and Director of the German Reference Centre for Ethics in the Life Sciences (since 1999), both located in Bonn. He is a member of the German Delegation of the Steering Committee for Bioethics (CDBI) of the Council of Europe, Strasbourg (since 1992).

Per Sørup
European Commission, Institute for Prospective Studies, Joint Research Centre, Sevilla

Dr Sorup holds a B.Sc., a M.Sc. and a Ph.D. From 1968 to 1980 he undertake the academic career at the University of Copenhagen (Royal Veterinary and Agricultural University, Medical Faculty (DK), Department of Experimental Immunology, the H.C.Orsted Institute) and the Weizmann Institute of Science, Rehovot, Israel (Professor Michael Sela). He then worked, as Head of Section, responsible for regulations on dangerous chemicals, their toxicology, classification and labelling at the National Agency for the Environment (DK). He was the Chairman of the 'Chemicals Group' of the Nordic Council of Ministers, and Danish representative to various OECD working groups, e.g. 'International trade and dangerous chemicals'. (01.08.80-28.10.86). He also worked , as Head of Section at Ministry for the Environment (DK), Unit for Research and Forward Studies. Dr Sorup was member of the Danish Government's Research Committee and the Council for Research Planning and Policy, secretary to the Ministry's Research Council. Secretary to the Minister's working group on Risk and Risk Communication in relation to major industrial risks.

In 1990 he joined the European Commmsion (DG XII (DG RTD)) to work on the Socio-Economic Area of the Environment Research Programme (the so-called 'SEER Programme'), as Co-ordinator (for DG XII) of the EC input at the UN Conference on Sustainable Development, Rio 1992, member of the Commission's inter-service group preparing for the Targeted Socio-Economic Research Programme of the 4th Framework Programme [the TSER Programme], substitute for the Director at OECD meetings on clean technology. He then joined the Forward Studies Unit of the President of the European Commission (Cellule de Prospective). Work related to the Commission's White Paper on 'Growth, Competitiveness and Employment', acted as secretary to the inter-service group set up on the request of the Cabinet of President Delors, on 'Employment, Growth and the Environment' and 'Environmental Indicators and National 'Green' Accounting'. In 1995 he joined the Institute for Prospective Technological Studies (IPTS), Joint Research Center, European Commission, first as principal Scientific Officer, Co-ordinator of the Environment sector, then as responsible for management and development of the European Science and Technology Observatory (ESTO) Network, Co-ordinator of the collaboration between IPTS and ETAN (European Technology Assessment Network) as well as between IPTS and the European Agency for the Environment (EAE).(01.01.95 -15.02.99). Dr Sorup is currently Head of Unit. Technologies for Sustainable Development. (16.02.99-).

Jean-Jacques Cassiman, Belgium
Centre for Human Genetics, Leuven

After his training as an MD specialising in paediatrics, Jean-Jacques Cassiman spent 5 years at the University of Stanford, CA, USA. Since 1984, he has been a full Professor of Human Genetics and since 1999, division head of the Centre for Human Genetics in Leuven, Belgium. He is director of the laboratory for forensic genetics and molecular archaeology and coordinator of EU projects on cystic fibrosis. From 1993-99 he was secretary-general of the European Society of Human Genetics and since 2002 he has been the liaison officer for the ESHG to the International Federation of Human Genetics Societies.

He is secretary of EPPOSI (European Platform for Patient Organisations, Science and Industry) and a board member of VIWTA (Flemish Institute for Science and Technological aspects of the Flemish Parliament).

Ségolène Aymé
French Medical Research Council (INSERM)

Ségolène Aymé is a medical geneticist, director of research at the French Medical Research Council (INSERM). She is the executive manager of the INSERM department dedicated to information on rare diseases and orphan drugs in Paris. This service established in 1997 the European database of rare diseases and orphan drugs called Orphanet http://www.orpha.net, currently funded by the French Ministry of health, the INSERM and the European commission (DG Public Health and DG Research). She is a member of the Working Group of Interested Parties of the Committee of Orphan Medicinal Products (WGIP-COMP) at EMEA. She is a board member of EPPOSI, the European Platform of Patients organisations, Science and Industry. She was the founder and the president from 1997 to 1999 of the International Federation of Human Genetics Societies. She is also the current chairperson of the Public and Professional Policy Committee of the European Society of Human Genetics which is releasing recommendations and guidelines.

Dr. Elettra Ronchi
Co-ordinator Health & Biotechnology Activities
OECD-STI-BU
Paris, France

Elettra Ronchi , Ph.D.,-is Co-ordinator of Health and Biotechnology Activities at the OECD, Directorate for Science, Technology and Industry. Dr. Ronchi has acted as consultant and science adviser on biotechnology, health system management and technology transfer for human health to the United Nations and the OECD since 1992. In 1995 Dr. Ronchi joined the OECD to lead a programme of work on new emerging technologies related to human health, particularly new biotechnologies. Dr. Ronchi participates as expert and as OECD representative on a number of committees and advisory boards, including the the Program in Applied Ethics and Biotechnology of the University of Toronto and the UN Interagency Committee on Bioethics. Elettra Ronchi earned a Ph.D. from the Rockefeller University/Cornell Medical School in New York, (US). She has held research, teaching and assistant appointments at the Howard Hughes Medical Institute of the Rockefeller University in New York, the University La Sapienza of Rome and at the Ecole Normale Superieure, in Paris. She has lectured and published extensively on topics linked to new developments in molecular genetics and biotechnology and their impact on health care and regulatory systems.

Erik Tambuyzer, Belgium
Genzyme Corporation

Dr. Ir. Tambuyzer is Genzyme’s Senior Vice President Corporate Affairs Europe, and a member of the European Management Board of Genzyme Corporation. Starting his professional career at Baxter Health Care in 1977, he pursued his career six years later at Innovi NV (Brussels, Belgium), a technology management and consultancy company. In 1985, he co-founded the biotech company Innogenetics NV (Ghent, Belgium), of which he was General Manager until 1992, when he joined Genzyme Europe.

Dr. Tambuyzer is Chairman of the Healthcare Board of EuropaBio, the European Association for Bioindustries, and founder and Chairman of the Ethics Working Group of this Association. He is also Vice-Chairman of the European Platform for Patients’ Organisations, Science & Industry, EPPOSI, and an adviser to international journals.

Dr. Tambuyzer is a bio-engineer and holds a doctoral degree in bio-industrial sciences from the University of Leuven, (KUL), Belgium. A Belgian citizen, he is married and has three children.

Judit Sándor
J.D. LLM. Ph.D.

Judit Sándor is professor at the Faculty of Political Science, Legal Studies and Gender Studies of the Central European University (CEU), Budapest. She received her JD at the Faculty of Law in Budapest. In 1990 she was as a visiting scholar at the McGill University specialising in medical law. She completed the Hungarian bar exam and in 1991 she was an intern in London with the Simmons & Simmons. She received an LLM degree on comparative constitutional law. In 1993 she was a visiting scholar at the Hastings Center (New York), in 1996 visiting scholar at the Maison des sciences de l' homme (Paris). In 1996 received Ph.D. in law and political science. She was a course co-director at the Inter-University Centre, Dubrovnik and since 2000 co-director at the Summer University Program of the CEU. In 1998 she had a fellowship at Stanford University, and in 2001 in the Netherlands. In 2000 she received the title of associate professor. Her main publications and books are in the field of health care law, human rights, reproduction and genetics. She is one of the Founders of the Patients' Right Foundation in Hungary, she is a legal expert at the Hungarian Science and Research Ethics Council, and member of the Hungarian Human Reproduction Commission. In 2002-2003 she worked as a legal expert in the work of the UNESCO in drafting an international legal instrument on genetic data. Currently she participates at three European Research Projects. In 2003 she was appointed as an expert in biomedical law at the Advisory Committee on Genetics of the Hungarian Prime Minister. In 2004 received the title of professor of law and political science at the Central European University.

Bernadette Moran

Bernadette Moran is a founder member of The Huntingtons Disease Association of Ireland (HDAI). She worked for HDAI full-time for two and a half years. She now works as an Employee Assistance Officer and works in a voluntary capacity as Development Officer of HDAI. Bernie is on the International Huntingtons Association Board and was a former secretary. She is also a Board member of The Genetic Inherited Disorders Organisation (GIDO) an alliance of Irish voluntary organisations for people affected by genetic conditions.

Prof. Dr. med. Heinrich M. Schulte

Heinrich M. Schulte is professor of medicine and endocrinology, founder and director of the Endokrinologikum Hamburg, Centre for Hormone and Metabolic Diseases, and co-founder of several life science companies, among them EVOTEC OAI AG and GENTEQ GMBH, both Hamburg.

After his Staatsexamen und Promotion at the Medical Faculty at the University Essen he did his postgraduate studies at the School of Endocrinology, Hammersmith Hospital, London and as a visiting fellow and Heisenberg fellow at the National Institute of Health in Bethesda, Maryland, USA. His habilitation in internal medicine was followed by the professorship for internal medicine at the University of Kiel and by the directorship of the IHF Institute for Hormone and Reproductive Research of the University Hamburg. Currently Professor Schulte is president of the European Society for Clinical Investigation.

Professor Schulte is member of a number of international organisations including EuropaBio. He is member of the board of directors in several life science companies.

Laurence Lwoff

Laurence LWOFF holds a MD in physiology from the University of Paris VI – Jussieu (France). She then obtained her degree in Agronomy from the Institut National Agronomique Paris-Grignon (France) in 1986 and received her PhD in molecular biology in 1989.
She joined the Council of Europe in 1991, where she was entrusted with the responsibilities of the Secretariat of the Conventions concerning the use of animals in science and agriculture, in the Public Law Department. In 1999, her responsibilities were extended to biotechnology. She was the Secretary of the International Conference of the Council of Europe on Ethical Issues Arising from the Applications of Biotechnology (Oviedo, Spain, May 19999). In July 2002, she joined the Bioethics Division where she is responsible in particular for the activities on human genetics and on the protection of the human embryo and foetus.

Domenico Coviello
ICP-University Hospital, Milan, Italy

Domenico Coviello (MD, PhD) is a medical geneticist, currently Head of the Laboratory of Medical Genetics, ICP- Milan, Italy (Mangiagalli Clinic, University Hospital of Milan). He has been working at University of Modena (1998-2000), and at University of Genoa (1989-1997). His research activity has been dedicated mainly to laboratory activity (cytogenetics and molecular genetics) and to genetic counselling with particularly interest in education of professionals. He worked in several international labs: 1978-Cytogenetic Laboratory, Guy's Hospital Medical School, London; 1984-William Dunn School of Pathology, University of Oxford; 1987-1988-Department of Molecular Genetics, M.D. Anderson Cancer Centre, University of Texas, Houston, Texas, USA; 1991-Human Genetics Branch, NICHD, NIH, Betesda, MD, USA; 1995 and 1997-Department of Genetics, Harvard Medical School, Boston, MA, USA.
Organiser of the Satellite Meeting of the European Society of Human Genetics (ESHG) Conference (1997) “Education, Training and Responsibilities of Non-MDs Genetic Counsellors”; Co-Organiser of the workshop of the ESHG conference (2000) on “Training of non-medical genetic counsellors in Europe”; Member of the Public and Professional Policy Committee of the ESHG; Member of the Educational Committee of ESHG.

Celia Brazell, UK
GlaxoSmithKline

Dr Brazell is the Genetics Science and Technology Director for Genetics Research at GlaxoSmithKline. In this role she works with research ethics committees, drug/device regulators, policymakers and healthcare providers to explore the application of genetics to healthcare improvement.

Since completing her PhD in Neuropharmacology at the Queen's Medical Centre, Nottingham University, UK, she has worked in pharmaceutical research, development and policy with Merck Sharp & Dohme and GlaxoSmithKline.

She is a member of the UK Human Genetics Commission, the UK Department of Health Advisory Group for Genetics Research and the Council for International Organisations of Medical Sciences (CIOMS) Working Group on Pharmacogenetics and Pharmacoeconomics.

Prof. Stefano Rodotà

Professor of Civil Law, University of Rome; Chairman of the Italian Data Protection Authority; former Chairman of the European Group of the Data Protection Authorities Chairman of the Commission on Genetic Testing and Counselling; Member of the European Group on Ethics in science and technologies, Member of the Convention drafting the Charter of Fundamental Rights of the European Union (2000); Former Member of the HUGO Ethics Committee (1997-2000); Member of the Ethics Committee of the National Research Council; Work in the field of the legal and social effects of scientific innovation (1972-2000); Important work in the field of bioethics (1989-2000); Author of several books and editor of a number of periodicals; Member of the Italian Parliament (1979-1994); Vice-President of the Chamber of Deputies (1992); Member of the Parliamentary Assembly of the Council of Europe (1983-1994); Member of the European Commission's Group of Advisers on the Ethical Implications of Biotechnology (1994-1997); Member of the European Group on Ethics (since 1998); Chairman of the European Group of Authorities for the Protection of Privacy (1999-2000).

Paula Lobato de Faria, Portugal
New University of Lisbon

Professor Lobato de Faria is a lawyer and Associate Professor of Health Law and BioLaw at the National School of Public Health and in the Faculty of Law at the Universidade Nova de Lisboa (New University of Lisbon). She is also a consultant in ethical-legal aspects to the National Agency for the Fight Against AIDS, and for four years was the coordinator of the National Commission for the United Nations Decade for the Education on Human Rights in the Presidency of the Council of Ministers. She has also worked as a visiting professor in the Department of Health Law, Bioethics and Human Rights in the Boston University School of Public Health.

Author of approximately 60 papers, Professor Lobato de Faria has directed and given different courses, seminars and conferences in Portugal and abroad mainly on patients’ rights, legal aspects of AIDS, medical liability, legal problems of genetics, informed consent, intensive-care ethical/legal questions and health data protection and confidentiality. Her PhD subject was on the ethical and legal problems of genetic data. Her work has been published in France by the Presses Universitaires du Septentrion (“Données Génétiques Informatisées – un nouveau défi au droit à la confidentialité des données personnelles de santé”, 1999). She is also author of several articles, published in Portuguese and in international magazines and she is currently writing the Portuguese monography on medical law to the Kluwer International Encyclopaedia of Laws.

Thomas Weihrauch, Germany
Global Medical Strategy and Relations

Bayer AG, Pharmaceutical Research Centre
Professor Weihrauch has an MD and PhD in Medicine. He is Associate Professor of Medicine, University of Düsseldorf, Germany and Lecturer in Internal Medicine and Therapeutics. He has a specialisation as internist, gastroenterologist, and examiner in clinical pharmacology. He has chaired and participated in a number of industry/government working groups and is an expert in genomics/pharmacogenomics as well as healthcare and health economics issues in medicine, drug safety, innovation, access to medicines. He is currently Advisor to the German Ministry of Education and Research (BMBF) and co-chairman of the CIOMS VII Working Group (WHO, Geneva).

European Commission contacts

Barbara Rhode

Dr Rhode has a diploma in sociology and a Ph.D. in political sciences. She is responsible for the ‘Ethics and Science’ unit in the Research Directorate General of the European Commission. In the 1990s she was responsible for the accession negotiations to the EU in research for Hungary, the Czech Republic and Slovakia, for science relations with Switzerland, and some ex-USSR countries. She has been working with the EU since 1991. As a national expert she prepared the social sciences programme for DG RTD.

She has also been a consultant to the UN, an expert for the Council of Europe and vice chair of the German Social Science Committee to UNESCO. In the 1980s she was seconded by the German Federal Ministry for Science and Technology (BMFT) to a UNESCO East-West co-operation institute in Vienna/Austria, directing East-West research projects on environmental policies, on legal policies, and on the internationalisation of penal law. Dr Rhode was a scientific adviser at the Max-Planck-Institute for International and Comparative Private Law in Hamburg, Germany. She has published scientific papers on economic law and labour law, European environmental policies, international environmental criminal law, environmental ethics, and communications and strategy papers on EU foreign policies in science and technology.

Maurizio Salvi

Maurizio Salvi holds MDs in modern literature and in philosophy, a postgraduate diploma in bioethics, a PhD in health sciences and a European PhD in biotechnology. He has lectured in bioethics at the Universities of Rome, Maastricht and Leuven and has undertaken research on ethical and legal implications of biotechnology for the International Forum of Biophilosophy, the Flemish Institute of Biotechnology and several research bodies in the EU. Dr Salvi was Director of the human rights and bioethics course at the Interuniversity Centre in Dubrovnik. In 1998, he joined the European Commission with specific responsibility for ethics and bioethics. He has published around 40 papers on ethical, legal and social issues of biomedicine and biotechnology, theoretical biology, ethics and analytical philosophy.