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Strasbourg, 20 June 2016                                                                                DH-BIO/ abr RAP 9rev

COMMITTEE ON BIOETHICS

(DH-BIO)

9th MEETING

Strasbourg, 31 May-2 June 2016

ABRIDGED REPORT


I.          Adoption of the agenda

1.         The Committee on Bioethics (DH-BIO) held its 9th meeting in Strasbourg from 31 May to 2 June 2016. The agenda of the meeting and the list of participants appear in Appendix I and Appendix II to this abridged report.

II.         Chart of signatures and ratifications of the Convention on Human Rights and Biomedicine, the Protocol on the Prohibition of Cloning Human Beings, the Protocol concerning Transplantation of Organs and Tissues of Human Origin, the Protocol concerning Biomedical Research and the Protocol concerning Genetic Testing for Health Purposes

2.         The DH-BIO took note of the information sent in written form on the current process towards signature and/or ratification of the Convention on Human Rights and Biomedicine (Oviedo Convention) and/or its Additional Protocols in some member and observer states. It noted in this respect the ratification by Romania of the Additional Protocol on Transplantation of Organs and Tissues of Human Origin on 20 April 2016.

III.        Developments in the field of bioethics

3.         The DH-BIO took note of the developments in the field of bioethics within the member states, as well as in international organisations. It was also informed of the relevant developments in other Council of Europe bodies.

IV.       Additional Protocol on the protection of the human rights and dignity of persons with mental disorders with regard to involuntary placement and involuntary treatment

4.         After having discussed possible options on the way forward in the light of the submissions made during the public consultation and the Recommendation of the Parliamentary Assembly, the DH-BIO agreed on the necessity of continuing the work undertaken on the protection of the human rights and dignity of persons with mental disorders with regard to involuntary measures.

5.         At this stage, subject to possible decision by the Committee of Ministers, the drafting group would be requested to continue developing the draft made public for consultation, taking into account the comments received during this consultation, with a view to reinforcing the necessary safeguards to ensure that involuntary measures are exceptional and used as a last resort in the absence of alternatives.

6.         The DH-BIO also agreed on the importance of information exchange and sharing of best practices with a view to the complementary development of guidelines to reduce the use of involuntary measures. Taking into account its field of competence, the DH-BIO agrees that cooperation with other committees, in particular the (Ad hoc Committee of experts on the Rights of Persons with Disabilities (CAHDPH), could be usefully considered in this context.

7.         The DH-BIO agreed to directly involve INGOs in the work to be undertaken, by inviting organisations to participate as observers in the relevant sessions of its meetings. The practice of the CAHDPH could serve as an example.

8.         The DH-BIO adopted comments on Parliamentary Assembly (PACE) Recommendation 2091 (2016) – “The case against a Council of Europe legal instrument on involuntary measures in psychiatry” in reply to the request made by the Committee of Ministers.

V.         Cooperation activities

9.         The DH-BIO took note that two seminars on issues around the decision making process regarding medical treatment in end-of-life situations were being organised in cooperation with the Armenian authorities (seminar planed on 7 October 2016) and the Turkish authorities (seminar planed on 25 October 2016) respectively. The seminars would be an occasion to publicize and raise awareness on the Guide on the decision-making process regarding medical treatment in end-of-life situations, which had recently been translated into both Armenian and Turkish.

VI.       Emerging technologies

10.       The DH-BIO examined the two proposals made by the Strategic Group on Emerging technologies and human rights based on the outcome of the conference organised on the topic in 2015 and the preparatory studies.

11.       The DH-BIO agreed with the proposal to work on the development of democratic discourse and critical engagement, using Article 28 of the Oviedo Convention as a basis. As a first step, it agreed to prepare a survey on relevant practices aimed at raising public awareness and fostering public discourse in relation to technological developments and their ethical implication. The survey should  also examine how such public debate is connected to decision making processes and take stock of possible initiatives currently taken in relation to emerging technologies.

12.       It entrusted the Bureau in consultation with some experts in particular from the Strategic Group and in cooperation with the Secretariat with the task of preparing a questionnaire for this survey with a view to sending it to delegations at the latest in the beginning of 2017.

13.       The DH-BIO further agreed with the relevance of the elements for a framework document proposed by the Strategic Group in its second proposal. However, it considered that further work would need to be done on this text that may be difficult to achieve in a near future. It agreed nevertheless that these elements, after some editorial work, could be helpful in preparing a relevant session in the international Conference marking the 20th anniversary of the Oviedo Convention in November 2017. Work on the framework document could possibly be resumed after the conference taking into account its outcome.

VII.      Follow-up to the Statement on prohibition of financial gain

14.       The DH-BIO took note of the results of the first meeting of the Ad hoc group on the prohibition of financial gain. The Chairperson of the grouppresented the main lines of the document being prepared by the group. She mentioned that the aim was to provide guidance on how to interpret the principle on the prohibition of financial gain laid down in Article 21 of the Oviedo Convention, and that the scope of the text being prepared was general, applying to all body parts and substances from living or deceased donors.

15.       A number of remarks were raised by delegations concerning the scope of the document, including with regard to biomedical research, for which the principle of the prohibition of financial gain is also relevant. The group was asked to reflect upon those remarks.

VIII.     Seminar on the international case law in bioethics

16.       The DH-BIO took note of the draft programme of the seminar on “International case-law in Bioethics: Insight and foresight” to be held in Strasbourg on 5 December 2016, prepared by the DH-BIO Rapporteur in cooperation with the Secretariat.

IX.       Working methods and future activities of the DH-BIO

17.       Mr Christos Giakoumopoulos, Director for Human Rights, Directorate General of Human Rights and Rule of Law, addressed the DH-BIO. In his speech, he made reference to the current projects of the DH-BIO and their relevance in the context of the Council of Europe’s work on human rights.

18.       The DH-BIO agreed to set up a preparatory group with the task of organising, in November 2017, an international conference to be held on the occasion of the 20th anniversary of the opening for signature of the Oviedo Convention. It further agreed to entrust the group in cooperation with the Secretariat, with preparing a questionnaire on the impact of the Convention, the relevance of its provisions and possible challenges raised by new developments in the field concerned.

19.       DH-BIO members interested in joining the preparatory group were invited to inform the Secretariat by 15 June 2016.

X.         Election to the Bureau

20.       Following the end of term of Ms Doris Wolfslehner (Austria) in the Bureau, the DH-BIO elected by acclamation Prof. Constantinos Phellas (Cyprus), as member of the Bureau for a term of office of two years, renewable once.

XI.       Relations with other international bodies

21.       The DH-BIO took note of the document prepared by the Secretariat with the list of meetings with other international organisations.

XII.      Date of next meetings

22.       The DH-BIO agreed on the following dates for its next meetings:

-            10th meeting of the DH-BIO: 5-8 December 2016

-            11th meeting of the DH-BIO: 6-8 June 2017 (alt. 29-31 May 2017)

-            12th meeting of the DH-BIO: 21(20)-24(23) November 2017 (to be confirmed)

XIII.     Cooperation with other committees

23.       The Secretariat of the T-PD gave the DH-BIO an update on the work on the modernisation of the Convention for the Protection of Individuals with regard to Automatic Processing of Personal which was entering their final phase.

24.       Furthermore, T-PD invited delegations of DH-BIO to submit comments on the new draft Recommendation on the Protection of Health Data by 20 June 2016.

25.       The Secretarial of T-PD finally recalled the joint meeting held by the Bureaus of both Committees in 2015 and agreed with the Bureau of DH-BIO on the relevance of organising another such joint Bureau meeting in October 2016. The two Secretariats would get in touch after the 33rd plenary meeting of the T-PD (29 June- 1 July 2016) in order to propose dates.

26.       The Secretary of the CD-P-TO referred to a number of current activities being developed by that committee which were of relevance for the DH-BIO. She underlined the positive cooperation between both committees on the work on the prohibition of financial gain.

27.       Moreover, the DH-BIO would be invited to send comments on the new edition of the Tissues and Cells Guide, as well as to provide legal expertise regarding a review of the relevant legislation in Belarus, to ensure consistence with the Oviedo Convention and its Additional Protocol on Transplantation of Organs and Tissues of Human Origin.

XIV.    Other business

a. Transgender and intersex children

28.       The DH-BIO hosted a hearing of experts on human rights challenges faced by transgender and intersex children organised in cooperation with the Sexual Orientation and Gender Identity (SOGI) Unit of the Council of Europe within the framework of the Strategy for the Rights of the Child 2016-2022.


b. HELP and Bioethics

29.       The DH-BIO took note of a project of course on human rights and biomedicine addressed to legal and health professionals prepared by the Secretariat. The funding of this project was not yet secured and will require voluntary contribution(s).

c. Surrogacy

30.       The DH-BIO took note of the compilation of replies to the questionnaire on medically assisted procreation and surrogacy. Delegations not having done so were invited to submit their replies. It was agreed that the information presented in the document should be kept up to date.  

d. Council of Europe Strategy on the Governance of Internet

31.       The DH-BIO heard a presentation of the new Strategy on the Governance of Internet by a member of the Media and Internet Governance Department who highlighted the issues which are most relevant for the DH-BIO.

e. Council of Europe Strategy for the Rights of the Child

32.       The DH-BIO heard a presentation of the new Strategy for the Rights of the Child by a member of the Children Rights Division who highlighted the issues which are most relevant for the DH-BIO.

f. Gender equality

33.       The rapporteur on Gender Equality presented the information document on Policy Briefs and Council of Europe Activities prepared by the Gender Equality Unit.


APPENDIX I

Agenda of the 9th meeting of the DH-BIO

LIST OF ITEMS

1. Adoption of the draft agenda

2. Chart of signatures and ratifications of the Convention on Human Rights and Biomedicine, the Protocol on the Prohibition of Cloning Human Beings, the Protocol concerning Transplantation of Organs and Tissues of Human Origin, the Protocol concerning Biomedical Research and the Protocol concerning Genetic Testing for Health Purposes

3. Developments in the field of bioethics

4. Additional Protocol on the protection of the human rights and dignity of persons with mental disorders with regard to involuntary placement and involuntary treatment

5. Cooperation programme (DEBRA)

6. Emerging technologies

7. Follow-up to the Statement on prohibition of financial gain

8. Seminar on the international case law in bioethics

9. Working methods and future activities of the DH-BIO

10. Election to the Bureau

11. Relations with other international bodies

12. Dates of the next meetings

13. Cooperation with other committees

14. Other business

15. Decisions taken by the DH-BIO at its 9th meeting


TUESDAY 31 MAY MORNING (9.30 – 13.00)

09.30

1. Adoption of the draft Agenda

2. Chart of signatures and ratifications of the Convention on Human Rights and Biomedicine, the Protocol on the Prohibition of Cloning Human Beings, the Protocol concerning Transplantation of Organs and Tissues of Human Origin, the Protocol concerning Biomedical Research and the Protocol concerning Genetic Testing for Health Purposes

3. Developments in the field of bioethics

Delegations, including observers, are invited to send information in writing.

  1. Developments in member states and other states
  2. Developments in international organisations
  3. Developments in other Council of Europe bodies
  4. Developments at the European Court of Human Rights

11. Relations with other international bodies

5. Cooperation activities

a. High level Conference “Human rights and biomedicine: ethical and legal aspects of organ donation, 26 April, Moscow (Russian Federation)

b. Seminars planned in 2016 at the request of national delegations: Armenia and Turkey

13. Cooperation with other Committees

i)             European Committee on Organ Transplantation (CD-P-TO)

ii)            European Committee on Blood Transfusion (CD-P-TS)

7. Follow-up to the Statement on prohibition of financial gain

-    Presentation of the work carried out by the Ad hoc working group at its first meeting, including the proposal for an outline document, with a view to obtaining indications from the DH-BIO.

14. Other business

a. Presentation on transgender and intersex children

TUESDAY 31 MAY AFTERNOON (14.30 – 18.00)

9. Working methods and future activities of the DH-BIO

Address by Mr. C. Giakoumopoulos, Director of Human Rights

6. Emerging technologies

-  Examination of the proposal(s) from the Strategic Group on possible initiative(s) that could be taken by the DH-BIO, based on the outcome of the Conference held in May 2015, with a view to a decision.


WEDNESDAY 1 JUNE MORNING (9.00 – 13.00)

4. Additional Protocol on the protection of the human rights and dignity of persons with mental disorders with regard to involuntary placement and involuntary treatment

  1. Examination of the replies from the delegations to the questions on the possible way(s) forward on the work on the protection of the human rights and dignity of persons with mental disorders with regard to involuntary placement and involuntary treatment, with a view to a decision.
  2. Discussion of possible participation of INGOs in the work to be undertaken, with a view to a decision.
  3. In accordance with the decision of the Committee of Ministers, preparation of comments on PACE Recommendation 2091 (2016) – “The case against a Council of Europe legal instrument on involuntary measures in psychiatry”, with a view to its adoption.

WEDNESDAY 1 JUNE AFTERNOON (14.30 – 18.00)

4. Additional Protocol on the protection of the human rights and dignity of persons with mental disorders with regard to involuntary placement and involuntary treatment (to continue, where necessary)

8. Seminar on the international case law in bioethics

-  Presentation of the draft programme of the seminar.

9. Working methods and future activities of the DH-BIO

Conference on the occasion of the 20th anniversary of the Oviedo Convention – “Relevance and challenges”, to be held in November 2017

-      Setting up of a preparatory group

-      Preparation of a questionnaire for the survey on the Oviedo Convention: impact, relevance and challenges

THURSDAY 2 JUNE MORNING (9.00-13.00)

13. Cooperation with other committees

iii)           Consultative Committee of the Convention for the Protection of Individuals with regard to Automatic Processing of Personal Data (T-PD)

14. Other business

b. Questionnaire on medically assisted procreation, including surrogacy

- Updated and complementary replies on surrogacy, sent by delegations.

c. Course on core bioethics principles, in the framework of the HELP programme

d. New Council of Europe Strategy on the governance of the internet

e. New Council of Europe Strategy for the Rights of the Child (2016-2021)

f. Gender equality


10. Election to the Bureau

Delegations will have to elect a new member of the Bureau for a two years term.

The election will take place on Thursday 2 June in the morning.

Submission for nominations should be sent to the Secretariat by 14.00 on Wednesday 1 June 2016. 

12. Dates of the next meetings

Dates proposed:

10th meeting of the DH-BIO:  5 – 8 December 2016

11th meeting of the DH-BIO: 5-7 June 2017 (alternative 29 – 31 May 2017)

12th meeting of the DH-BIO: 21 (20) – 24 (23) November 2017 (to be confirmed)

15. Decisions taken by the DH-BIO at its 9th meeting

Approval of the list of decisions

DOCUMENTS FOR POSSIBLE UPDATE BY DELEGATIONS

Delegations are invited to provide where appropriate updated information of the following documents


APPENDIX II

List of participants

MEMBER STATES / ETATS MEMBRES

Albania/Albanie -                                                                                                                             apologised/excusé

Andorra/Andorre – Mme Imma RODRIGUEZ, Carrer Pau Casals 2, 3r 1a. AD 500-ANDORRA LA VELLA

Armenia/Arménie – Mr Igor MADOYAN, Phd, President of National Center of Bioethics, n.24, ave Sayat-Nova, apt. 14, entrance 1, 0001 YEREVAN

Austria/Autriche Dr. Doris WOLFSLEHNER, Head of the division “Bioethics” at the Federal Chancellery of the Republic of Austria, Ballhausplatz 2, 1014 Wien

Dr Renate FALLY-KAUSEK, Medical Officer, Federal Ministry of Health, Department III/8– Health of children and young people, gender aspects, nutrition, Radetzkystrasse 2, A-1030 WIEN

Dr. Peter BARTH, Oberstaatsanwalt, Abteilungsleiter-Stellvertreter in der Zivilrechtssektion, 1070 Wien, Museumstraße 7                                                                                                apologised/excusé

Azerbaijan/Azerbaïdjan – Dr Alamadar MAMMADOV CHARKAZ (PhD), Head of lab Structure and Expression of Genome of FPBP of Institute Botany of ANAS, 3. AZ1073, Baku, 40 Badamdar highway, Institute of Botany                                                                                                                      apologised/excusé

Belgium/Belgique Mme Régine WILMOTTE, Juriste au sein de la direction générale des Etablissements de Soins du Service public fédéral « Santé publique », Place Victor Horta 40, boite 10, 1060 Bruxelles

Bosnia and Herzegovina/Bosnie-Herzégovine Dr. Serifa GODINJAK, Head of Department for European Integration and International Cooperation, Sector for Health, Ministry of Civil Affairs, Trg BiH 1, 71000 Sarajevo, Bosnia and Herzegovina

Bulgaria/Bulgarie– Ms Sylvia TOMOVA, Ministry of Health, Legal Directorate, Chief Legal Advisor, Place St Nedelia 5, Sofia 1000

Croatia/Croatie Dr. Vanja NIKOLAC, Head of Service, Service for blood, tissues and cells inspection, Ministry of Health, Ksaver 200a, 10 000 Zagreb

Cyprus/Chypre Prof. Constantinos N. PHELLAS, Chair of the Cyprus National Bioethics Committee, University of Nicosia, 46, Makedonitissas Ave. P.O. Box 24005, 1700 Nicosia

Czech Republic/République Tchèque – Prof. Pavel MARTASEK, Professor of Medicine, Expert on Genetics, Dept. of Pediatrics, Center for Applied Genomics, 1st School of Medicine, Charles University, Ke Karlovu 2, Building D /2nd floor, 128 08 PRAGUE 2

Denmark/Danemark – Ms. Mia FRANCIS FERNEBORG, Ministry of Health, Fuldmægtig, Sygehuspolitik

                                                                                                                        apologised/excusée

Ms Kirstine F. HINDSBERGER, Ministry of Health, 6, Holbergsgade, DK-1057 Copenhagen K                                                                                                                                                  apologised/excusée

Estonia/Estonie Prof Hele EVERAUS, Head of the Clinic, Haematology and Oncology Clinic, Tartu University, Tartu University Hospital, Puusepa 8, 51014 Tartu

Finland/Finlande Katja KUUPPELOMÄKI, Legal Officer, Unit for Human Rights Courts and Conventions Legal Service, Ministry for Foreign Affairs of Finland

Ritva HALILA, M.D., Ph.D., Senior Medical Officer, National Advisory Board on Social Affairs and Health Care (ETENE), Ministry of Social Affairs and Health, P.O. Box 33, FI-00230 Government

Anneli TÖRRONEN, Ministry of Social Affairs and Health, P.O. Box 33, FI- 00023 Government

Mia SPOLANDER, Legal Officer, Ministry for Foreign Affairs, Unit for Human Rights Courts and Conventions (OIK-40), P.O. Box 411, (Laivastokatu 22), 00023 Valtioneuvosto                                       apologised/excusée

France - Mme Isabelle ERNY, Attachée principale d'administration centrale, Ministère de la Santé, Direction Générale de la Santé, Secrétariat Général, Division droit, éthique et appui juridique, 14 avenue Duquesne, 75350 PARIS 07 SP

Tania JEWCZUK, Magistrat, Bureau du droit des personnes et de la famille, Direction des affaires civiles et du sceau, Ministère de la Justice

Dr Jacques MONTAGUT, Directeur de l'IFREARES, 20 route de Revel, 31400 TOULOUSE

M. Rodolphe FERAL, Sous-direction des droits de l'homme, Direction des affaires juridiques, Ministère des affaires étrangères et européennes, 57, bd des Invalides, 75700 Paris

Georgia/Géorgie – Dr Givi JAVASHVILI,Head of Family Medicine Department, State Medical Academy of Georgia, Chairman of the National Council on Bioethics, 29 I. Chachavadze Avenue, 0179 TBILISI

Germany/Allemagne Andrea LOHR, Federal Ministry of Justice and Consumer Protection, Division III B 2, Mohrenstraße 37, D-10117 Berlin

Prof. Elmar DOPPELFELD, Honorary Chair of the Permanent Working Party of Research Ethics Committees in Germany Inc., Lenaustraße 15, D-50858 Köln

Prof. Thomas HEINEMANN, Philosophical-Theological University of Vallendar (PTHV), Pallottistraße 3, D-56179 Vallendar

Dr. Ingo HÄRTEL, Federal Ministry of Health, Division 313, Friedrichstraße 108, D-10117 Berlin

Dr. Daniela von BUBNOFF, Federal Ministry of Education and Research, Division 612, Friedrichstraße 130 B, D-10117 Berlin                                                                                                              apologised/excusée

Greece/Grèce Dr Stamatia GARANIS-PAPADATOS, Lecturer, National School of Public Health, 196 Alexandras Avenue, 11521 Athens

Hungary/Hongrie - Prof. Ernö BÁCSY, MD, PhD, DSc, advisor of the Presidency, Medical Research Council of Hungary (ETT), H-1051 Budapest, Arany János utca 6-8, Hungary

Iceland/Islande – Ms. Thorunn STEINSDOTTIR, Legal Advisor, Ministry of Welfare, Hafnarhúsinu við Tryggvagötu, 101 Reykjavik                                                                                                        apologised/excusée

Ireland/Irlande Dr. Siobhán O'SULLIVAN, Chief Bioethics Officer, Dept. of Health, Hawkins House, Dublin 2, Ireland                                                                                                                      apologised/excusée

Mr Paul IVORY, Bioethics Officer, CMO's Office, Department of Health, Hawkins Street, Dublin 2

Italy/Italie- Laura PALAZZANI, Lumsa, Facoltà di giurisprudenza, via Pompeo Magno 22, 00192 Roma                                                                                                               apologised/excusée

Prof. Assunta MORRESI, Prof. Associato di Chimica Fisica, Dipartimento di Chimica, Biologia e Biotecnologie, Università degli Studi di Perugia, V. Elce di Sotto, 8, 06123 PERUGIA (IT)

Latvia/Lettonie Dr.Vents SĪLIS, Assistant Professor at Riga Stradins University, Department of Humanities, Dzirciema street 16, Riga, LV- 1007

Liechtenstein                                                                                                      apologised/excusé

Lithuania/Lituanie – Dr Eugenijus GEFENAS, Chairman of Lithuanian Bioethics Committee, Associate Professor at Vilnius University, Lithuanian Bioethics Committee, Vilnius str.33, LT-2001 VILNIUS

Luxembourg Mr Jean-Claude MILMEISTER, Chargé d’études, Diplômé en biologie et en bioéthique, Commission Consultative Nationale d'Éthique pour les Sciences de la Vie et de la Santé (C.N.E.), 18-20, montée de la Pétrusse, L-2327 Luxembourg

Mr Mike SCHWEBAG, Médiateur Santé, Service national d’information et de médiation santé, 73, rue Adolphe Fischer (4e étage), L-1520  Luxembourg                                                 apologised/excusé

Malta/Malte - Mme Mary Anne CIAPPARA, B. Pharm., M. Phil. Pharmacist, Hon. Secretary, Bioethics Consultative Committee, Palazzo Castellania, 15 Merchant Street, VALLETA         apologised/excusée

Republic of Moldova/République de Moldova Mr. Andrei ȘVEȚ, Head of the Legal Department, Ministry of Health

Rodica GRAMMA, MD, PhD, associate professor, School of Public Health Management, Director of Department of International Relations and European Integration of the State University of Medicine and Pharmacy "Nicolae Testemitanu", Chisinau, Republic of Moldova,                                                                        apologised/excusée

Monaco-                                                                                                          apologised/excusé

Montenegro/Monténégro Ms Olivera MILJANOVIC, Prim. doc., Director of the Centre for Medical Genetics and Immunology, Medical Centre of Montenegro, Krusevac bb, 81000 Podgorica

Netherlands/Pays-Bas– Ms. Joyce BROUWERS-VERSTAPPEN, (Senior) Beleidsmedewerker, Afdeling Ethiek, directie Publieke Gezondheid, Ministry of Health, Welfare and Sport, Parnassusplein 5, The Hague

Norway/Norvège Mrs Anne FORUS, Senior Adviser, ph.d, Biotechnology and health legislation department, Division of specialised health care services, Norwegian Directorate of Health, P.O.Box 7000, St Olavs plass, N-0130 Oslo

Camilla Closs WALMANN, Senior Adviser, Department for Biotechnology and Health Law, Norwegian Directorate of Health, P.O.Box 7000 St Olavs plass, N-0130 Oslo, Norway

Ms Vårin Kathrin HELLEVIK, Senior Adviser, Department for Mental Health Care Services, Division of Specialist Health Care Services, Norwegian Directorate of Health, P.O. Box 7000 St Olavs Plass, N-0130 Oslo, Norway

Poland/Pologne – Ms Mariola GROCHULSKA, Département des droits de l'homme, Ministère de la Justice, Al. Ujazdowskie 11, 00-950 WARSAW

Portugal - Prof. Miguel OLIVEIRA DA SILVA, Medical Ethics Full Teacher at Lisbon Faculty of Medicine Av. Prof. Egas Moniz 1640-028, Lisboa

Romania/Roumanie Mr. Gheorghe BORCEAN, Vice-President of the Romanian College of Physicians, Spitalul Municipal Caransebes, str. Gradinilor nr. 36ª, CARANSEBES, jud. CARAS-SEVERIN 325400

Mrs Beatrice Gabriela IOAN, Associate Professor, President of the Bioethics Commission of the Romanian College of Physicians, Institutul de Medicina Legala, str. Bunavestire nr. 4, IASI

Russia/Russie – Mr Boris YUDIN, Director, Institute of Human Studies, Russian Academy of Sciences, Volkhonka 14, MOSCOW 119992

San Marino/Saint-Marin - Dr. Luisa BORGIA, Vice-President of the National Ethics Committee, Contrada Le Grazie, n.3, 62029 Tolentino (MC), Italia

Serbia/Serbie - Prof. Dr Zvonko MAGIC, Head of the Institute for Medical Research in the MMA (Military Medical Academy), professor of the human genetics at the Medical Faculty and Cochairmen of the National Committee for bioethics of UNESCO Commission of Serbia, Serbian Academy of Sciences and Arts, 11000 Belgrade, Serbia

Slovakia/Slovaquie Assoc. Prof. Jozef GLASA, MD, PhD, PhD; Institute of Pharmacology and Clinical Pharmacology, Slovak Medical University; National Reference Centre for Management of Chronic Hepatitis; Institute of Medical Ethics and Bioethics n.f.*; Ethics Committee, Ministry of Health SR; Limbová 12, 83303 Bratislava, Slovak Republic

Slovenia/Slovénie Urh GROSELJ, MD,MA, University Children's Hospital, University Medical Center Ljubljana, Bohoriceva 20, 1000 Ljubljana, Slovenia

Spain/Espagne Mª Concepción MARTIN ARRIBAS, Subdirección General de Investigación en Terapia Celular y Medicina Regenerativa – Instituto de Salud Carlos III – ISCIII, Avda. Monforte de Lemos 5, 28029 Madrid

Carlos ALONSO BEDATE, Centro de Biología Molecular, Member of the National Committee for Bioethics, C/ Alberto Aguilera, 21. 28015 Madrid, Spain

Prof. Carlos M. ROMEO – CASABONA, Professor of Penal Law, Head, Inter-University Chair in Law and the Human Genome, Avda. de las Universidades 24; 48007 BILBAO, Spain

Sweden/Suède– Mrs Tesi ASCHAN, Legal Adviser, The National Board of Health and Welfare, Socialstyrelsen, 106 30 Stockholm

Switzerland/Suisse Dr Martin GÖTZ, Office fédérale de la santé publique, Division Biomédecine, collaborateur scientifique, Seilerstrasse 8, 3003 Bern

Mme Mari VIRO MOSER, Cheffe suppléante de section, Département fédéral de l'intérieur DFI, Office fédéral de la santé publique OFSP, Division Affaires internationales, Section Union européenne et Etats voisins, Schwarzenburgstrasse 157, CH-3003 Berne

Mme Nadine KELLER, Collaboratrice scientifique, Département fédéral de l’intérieur – DFI, Office fédéral de la santé publique – OFSP, Section Sécurité biologique et génétique humaine, Seilerstrasse 8, 3003 Berne                                                                                                apologised/excusée

Ms. Rahel MÜLLER, avocate, Collaboratrice scientifique, Département fédéral de justice et police DFJP, Office fédéral de la justice OFJ, Domaine de direction de Droit privé, Gestion, état-major, Bundesrain 20, 3003 Berne                                                                                                                        apologised/excusée

"The Former Yugoslav Republic of Macedonia"/"l'ex-République yougoslave de Macédoine"

apologised/excusé

Turkey/Turquie– Prof. Ergun ÖZSUNAY, Professor of Civil, Comparative Law and EU Private law, Istanbul Culture University, Faculty of Law, İstiklal cad. 245, Tunca Apt. Daire 7, 34430 ISTANBUL

Ukraine- Prof Zoreslava SHKIRYAK-NYZHNYK, Vice-president of Bioethics Committee of National Academy of Medical Sciences, Chief of the Department of Family Health Problems, Academy of Postgraduate Education, Institute of Paediatrics, Obstetrics and Gynaecology, Mayborody str., 8, 04050 KYIV

United Kingdom/Royaume-Uni - Dr Mark BALE, Deputy Director, Health Science & Bioethics Division, Department of Health, Richmond House, Whitehall, London SW1A 2NS

Mr Peter MILLS, Assistant Director, Nuffield Council on Bioethics, 28 Bedford Square, London WC1B 3JS

INVITED EXPERTS / EXPERTS INVITES

Prof. Elaine GADD, Honorary Professor, School of Law, Queen Mary University of London, Fox Court, 6 Brooke St, London, WC1X 8HN

PARTICIPANTS

CDCJ – Mr Rodrigo RODRIGUEZ, Prof. dr en droit, avocat, Département fédéral de justice et police DFJP, Office fédéral de la Justice OFJ, Domaine de direction Droit privé, Bundesrain 20, 3003 Bern,

CDDH – Mr Alfonso de Salas, Secretary of the CDDH

Mme Brigitte KONZ, Juge de Paix directrice, Cité judiciaire, Plateau du St Esprit, Bâtiment JP - L-1475 Luxembourg                                                                                                                      apologised/excusée

CD-P-TS Dr. Guy RAUTMANN, Secretary of the European Committee on Blood Transfusion (CD-P-TS), European Directorate for the Quality of Medicines and HealthCare, Department of Biological Standardisation and OMCL Network                                                                        apologised/excusé

CD-P-TO Ms Marta LOPEZ FRAGA, Secretary of the CD-P-TO

T-PD Ms. Maria MICHAELIDOU, Administrator

MEDIA & INTERNET GOVERNANCE – Mr Lee HIBBARD, Internet policy Coordinator

CAHDPH- Mr Gianluca ESPOSITO, Head of Equality and Human Rights Department

Ms. Ita MIRIANASHVILI, Head of Section, Rights of persons with disabilities

CHILDREN'S RIGHTS POLICIES COORDINATION – Mrs Agnès von MARAVIC, Administrator

SOGI (SEXUAL ORIENTATION AND GENDER IDENTITY) – Ms. Eleni TSETSEKOU, Administrator

Mr Yuri DE BOER, Administrator

Ms. Tikli OIKARINEN, Administrator

CONGRESS OF LOCAL AND REGIONAL AUTHORITIES OF THE COUNCIL OF EUROPE - Ms. Sedef CANKOCAK, Current Affairs Committee, Secretary of Committee

GENDER EQUALITY – Ms. Carolina LASEN DIAZ, Administrator

ECRI – Mr Stefano VALENTI, Administrator

EUROPEAN COURT OF HUMAN RIGHTS– Mr Yves WINISDOERFFER, Head of Division

PARLIAMENTARY ASSEMBLY/ASSEMBLÉE PARLEMENTAIRE Ms/Mme Guguli MAGRADZE, Member of the Committee on Social Affairs, Health and Sustainable Development/Membre de la Commission des questions sociales, de la santé et du développement durable, Member of the Parliament of Georgia

Mrs Tanja KLEINSORGE, Head of Secretariat, Committee on Social Affairs, Health and Sustainable Development, Parliamentary Assembly of the Council of Europe, F-67075 Strasbourg Cedex

Mr Raul MAILLAINA, Co-Secretary to the Committee on Social Affairs, Health and Sustainable Development, Parliamentary Assembly of the Council of Europe, F-67075 Strasbourg Cedex

Ms. Elise CORNU, Head of the Secretariat, Committee on Equality and Non-Discrimination

Ms. Sarah BURTON, Administrator, Committee on Equality and Non-Discrimination

OFFICE OF THE COMMISSIONER FOR HUMAN RIGHTS / BUREAU DU COMMISSAIRE AUX DROITS DE L'HOMME - Mr Hasan BERMEK, Adviser, Council of Europe, F-67075 Strasbourg Cedex

Ms. Bojana URUMOVA, Head of Division II – Deputy to the Director

Mr Vahagn MURADYAN, Adviser Division II

CONFERENCE OF INGOS/ CONFÉRENCE DES OING - Mr Michel AGUILAR, Chair of the Human Rights Committee of the Conference of INGOs / Président de la Commission Droits de l'homme de la Conférence des OING

Mr Thierry MATHIEU, Vice-Chair of the Democracy, Social Cohesion and Global Challenges Committee of the Conference of INGOs, Member of the International Association for Research in Hospital Hygiene / Vice-Président de la Commission démocratie, cohésion sociale et enjeux mondiaux de la Conférence des OING et membre de l'Association Internationale pour la Recherche en Hygiène Hospitalière (AIRHH)                                                                     apologised/excusé

OTHER PARTICIPANTS / AUTRES PARTICIPANTS

EUROPEAN COMMISSION/COMMISSION EUROPEENNE– Dr Jim DRATWA, Head of Ethics and Head of the EGE Secretariat, Member of the Bureau of European Policy Advisers (BEPA), European Commission, Rue de la Loi 200 Wetsraat, BERL 8/358, B-1049 Brussels                                                                apologised/excusé

Canada Dr. Peter MONETTE, Manager of Bioethics, Department of Health Canada, Science Policy Directorate, Strategic Policy Branch, Health Canada, Brooke Claxton Building, 70 promenade Colombine Driveway, Tunney's Pasture, Ottawa, Ontario K1A 0K9 , Postal Locator: 0909C

apologised/excusé

Holy See/Saint-Siège– Mgr. Jacques SUAUDEAU, Cure Saint Bruno, 5 Place Saint Bruno, 38500 Voiron, France

Japan/Japon  Mr Takaaki SHINTAKU, Consul, Attorney Consulat Général du Japon à Strasbourg, 20, place des Halles, 67 000 STRASBOURG                                                                                       apologised/excusé

Mexico/Mexique – Dr. Manuel H RUIZ DE CHÁVEZ, President of the Council of the National Comission of Bioethics. Calz. Arenal No. 134, Col. Arenal-Tepepan, Deleg. Tlalpan, Mexico D. F., Mexico apologised/excusé

USA/Etats-Unis d'Amérique –                                                                           apologised/excusé

UNESCO Mrs. Dafna FEINHOLZ KLIP, Section de la bioéthique, Division de l'éthique des sciences et des technologies, UNESCO, 1 rue Miollis, 75732  PARIS CEDEX 15                                             apologised/excusée

Mr Tee Wee ANG, Permanent Secretariat, UN Inter-Agency Committee on Bioethics, UNESCO, 1 rue Miollis, 75732 PARIS CEDEX                                                                          apologised/excusé

Ms. Irina ZOUBENKO-LAPLANTE, Assistant Programme Specialist, Division of Ethics, Youth and Sport, 7 place de Fontenoy, 75352 Paris 07SP

OECD/OCDE– Mr Ken GUY, Head of the Science and Technology Policy Division, Directorate for Science, Technology and Innovation                                                                                                  apologised/excusé

World Health Organisation/Organisation Mondiale de la Santé (WHO/OMS) Dr Abha SAXENA (MD), Coordinator, Global Health Ethics, Secretary, Research Ethics Review Committee (ERC), HIS/KER, Cluster of Health Systems and Innovation, World Health Organization, 20, Avenue Appia, CH- 1211, Geneva 27, Switzerland        apologised/excusée

Dr Andreas REIS, Technical Officer, HIS/KER, Cluster of Health Systems and Innovation, World Health Organization, 20, Avenue Appia, CH- 1211, Geneva 27, Switzerland           apologised/excusé

OBSERVERS / OBSERVATEURS

Australia- Samantha ROBERTSON, Executive Director, Research Translation, National Health and Medical Research Council (NHMRC), Postal Address: National Health and Medical Research Council, GPO Box 1421, Canberra ACT 2601, Australia                                                                                                          apologised/excusée

Israel/Israël Dr Ilana SCHMIDT-HOPFELD, Department of Science Teaching, Weizmann Institute of Science, 200 Herzl St., REHOVOT 76100, Israel                                        apologised/excusée

Professeur Michel REVEL, Weizmann Institute, Department of Molecular Genetics, Brasil House, 5 REHOVOT 76100, Israel                                                                                                               apologised/excusé

European Science Foundation/Fondation Européenne de la Science (ESF) apologised/excusé

KEK – Conference of European Churches/Conférence des Eglises Européennes Pasteur Richard FISCHER, Secrétaire Exécutif de la Conférence des Eglises européennes, 8, rue du Fossé des Treize, 67000 Strasbourg                                                                                                                          apologised/excusé

SECRETARIAT

Bioethics Unit

Unité de la Bioéthique

Ms Laurence LWOFF, Secretary of the DH-BIO / Secrétaire du DH-BIO, Tel: +33 (0) 388 41 22 68, Email: [email protected]

Mr Ramon PRIETO SUAREZ, Administrator / Administrateur, Tel: +33 (0) 388 41 29 93, Email: [email protected]

Ms Katrin UERPMANN, Administrator / Administratrice, Tel: +33 (0) 390 21 43 25, Email: [email protected]

Ms Anna MIKHEDENKO, Project Officer / Chargée de projet, Tel: +33 (0) 390 21 60 49, Email: [email protected]

Ms Tatiana WINTER, Assistant / Assistante, Tel: +33 (0) 388 41 33 67, Email: [email protected]

Ms Catherine FORNÉ, Assistant / Assistante, Tel: +33 (0) 388 41 22 20, Email: [email protected]

Ms. Ombeline ROCH, Trainee / Stagiaire

INTERPRETERS / INTERPRETES

Sarah ADLINGTON

Amanda BEDDOWS

Shéhérazade HOYER

Christine TRAPP