Neuro-ethics

Activities in neuro-ethics started (unexpectedly and without prior education) at the initiation meeting of the Network of European CNS Transplantation And Restoration (NECTAR) in Munich D (October 20-21,1990). This network was originally founded as to develop and promote clinical neurografting in Parkinson's disease in Europe.
At this initiation meeting tasks were divided to settle this network as a project for an ad-hoc EU grant. With Anders Björklund (Lund, S) as president, Marc Peschanski (Paris, F) as secretary, Ole Lindvall (Lund, S) as clinical research coordinator, Steve Dunnett (Cambridge, UK) as animal research coordinator, I became appointed as ethics coordinator.
The founding meeting took place in Le Vesinet F on May 10-11, 1991, known as the first annual general meeting of NECTAR.

1991
- Presentation on 'Legality of the use of fetal material for grafting; survey of the variety of European guidelines' at the founding conference of the Network of European CNS Transplantation and Regeneration (NECTAR) Paris, France, May 10-11 (1991)
- Co-organisation Farewell Symposium Dr. Jan van Manen 'De ziekte van Parkinson, neuropharmacologische en neurochirurgische perspectieven', Academisch Medisch Centrum Amsterdam, March 15, 1991 (together with J. Speelman, AMC Amsterdam)

1991-1996
- Member of the board of the Network of European CNS Transplantation And Regeneration (NECTAR)

1991-1998
-
Ethics coordinator/Chairman subcommittee of NECTAR on "Ethical guidelines in experimental and clinical neurotransplantation"

1992
- Proposal for NECTAR ethical guidelines for the retrieval and use of human embryonic and fetal donor tissue for experimental and clinical neurotransplantation and research presented at the NECTAR mini-conference, Milan, Italy, January 24-26 (1992)
- Interview by Willibrord Frequin about 'Basic studies in neurotransplantation', Brandpunt, KRO, May 12, 1992 (including interviews with Jan van Manen, AMC, Amsterdam and Harry Steinbusch, VU, Amsterdam) (TV)

1993
- Presentation on the progress in the development of ethical guidelines on the retrieval and use of human embryos or fetuses within NECTAR at the 4th NECTAR Meeting, Brussels, August 27-28, 1993
- Interview by Maartje van Weegen on the Ins and outs of neurografting in Parkinson's disease patients, NOVA, October 15, 1993 (TV)

1994
- Presentation on 'De ontwikkelingen na de eerste implantaties bij Parkinson patiënten' at the Spring meeting of the Dutch Parkinson Patient Society, Bunnik, The Netherlands, May 28, 1994 (patient meeting)
- Presentation on 'The key issues of embryonic and fetal tissue transplantation, a response for the discussion' at the Int. Symp. on Ethics in Medicine & Reproductive Medicine, Paris, F, July 6-8, 1994, also published in 'Ethical aspects of human reproduction' (eds. C. Sureau and F. Shenfield) John Libbey, Eurotext, Paris (1995) pp 164-168
- Presentation on 'Ethical issues in brain grafts of embryonic cells' at the European Multidiciplinary Workshop on 'Ethical Aspects of Brain Research', Rome, I, December 15-17, 1994
- Publication 'Ethical guidelines for the use of human embryonic or fetal tissue for experimental and clinical neurotransplantation and research', J. Neurology 242 (1994) 1-13 (final document on behalf of the Network of European CNS Transplantation and Restoration, NECTAR)

1994-1998

- Member of the EC Working Group Human Embryo & Fetus Protection (HEF), Brussels. This group ethically reviewed ALL scientific project finally elected for an EU grant in Life sciences whenever embryo or fetus research was involved, and produced statements for discussions in the Council of Europe and the European Parliament

1995
- Presentation on 'Ethical guidelines of NECTAR for neurotransplantation and the state of the art within the EU' at the Symposium 'Neurotransplantation als neuartiges Therapie-konzept bei Morbus Parkinson: Klinisch-wissenschaftliche und ethisch-moralische Aspekte', Hannover, January 28-29, 1995
- Presentation on 'Ethical aspects of grafting in Huntington's disease', 5th NECTAR Annual General Meeting, Maastricht, October 27-29, 1995

1996
- Presentation on 'The self-restraining ethical guidelines of NECTAR for the clinical neurotransplantation investigations', at the workshop Personalität und Hirngewebtransplantation at the XVII German Congress for Philosophy, Leipzig, Germany, September, 1996, published also in 'Cognitio Humana - Dynamik des Wissens und der Werte' (eds. C. Huber and H. Poser, Allgemeine Gesellschaft für Philosophie in Deutschland, Leipzig, 1996, pp 1420-1427

1997
- Presentation on 'The use of human fetal tissue for medical purposes', National Health Council Meeting, Utrecht, June 1997
- Presentation on 'The use of embryonic and fetal brain tissue allo- and xenografts in human: the practice of the risk-benefit ratio ethical approach', First World Conference on Ethics codes in Medicine and Biotechnology, Freiburg, Germany, October 1997
- Contributor on the HEF discussion paper 'Protocol on the protection of the human embryo and fetus', presented to the Council of Eur0pe, Strassbourg F, October 1997

1997-2000
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Member project management group of the EC BIOTECH 2 project B104 CT97 2264 “Ethical, legal and social aspects of brain research” (BRAIN ELSA) (together with S. Gindro, chair, E. Mordini, coordinator, R. Bartlett (UK), H. Baumgartner (AU), S. Bloch (AUS), R. Bracalenti (I), J. Carbajosa (ES), F.F. Cruz-Sànchez (ES), S.Gindro (I), K.W.M. Fulford (UK), F. Gerstenbrand (AU), H. Helmchen (D), J. Vollmann (D), M. Di Giannantonio (I) and specially responsible for the topic brain tissue transplant

1998
- Presentation on 'Evaluation Parkinson and transplantation' at a meeting of the Medical Ethical Committee of Dutch National Health Council, The Hague, February 3, 1998.
- Presentation on 'De toekomst van hersenweefseltransplantatie bij de ziekte van Parkinson', Minisymposium `De therapeutische benadering van de ziekte van Parkinson: medicatie of chirurgie, Amsterdam, April 11, 1998 (neurologist meeting organized by Merck Sharp & Dohme B.V.)
- Presentation  on 'De toekomst van hersenweefseltransplantatie bij de ziekte van Parkinson' at a meeting of the Dutch Neurologist Society, Paterswolde, May 31, 1998.
- Introduction on brain tissue grafting at the Ad hoc workgroup 'Parkinson en Transplantatie', Amsterdam, June 16, 1998
- Interview by Jan Fred van Wijnen, 'Jonge Hersencellen repareren kapot brein', Vrij Nederland, September 12, 1998 (weekly magazine)
- Presentation on 'Onderzoek naar hersenceltransplantatie'at the Autumn meeting of the Dutch Parkinson Patient Society, Bunnik, October 10, 1998 (patient meeting)
- Presentation on 'Personal identity and neurotransplantation', XV European Conference on Ethics and Mental Health, Rome, I, October, 1998
- Presentation on 'New basal aspects in the application of neurografting in Parkinson patients' at the Ad hoc workgroup 'Parkinson en Transplantatie', Amsterdam, December 7, 1998 (together with Chris van Veelen, Utrecht)

1998-2002
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Member of the project management group of EC BIOMED project BMH4-CT98-3928 “Ethical guidance on the use of human embryonic and fetal tissue transplantation” (together with Guido de Wert and Ron Berghmans, Maastricht)

1999
- Statement on the possibilities of cell cloning in neurotransplantation as repair surgery, Meeting on Cloning, Institute of Health Ethics Maastricht and Rathenau Institute Amsterdam, Maasticht, April, 1999 (public meeting)
- An ethical view on cloning, at the Discussion Meeting on Cloning organized by the Humanistic League Groningen and Rathenau Institute Amsterdam, Groningen, The Netherlands, June 1999 (public meeting)
- Presentation on 'Attitude towards medical ethics in the Netherlands', Meeting on Medical ethics in the media, Center for Health Ethics, Evangelischen Akademie, Loccum, D, September 1999

2000
- Presentation on 'Sham surgery in EFTT trials in Parkinson’s disease', Workshop EC BIOMED project ‘Ethical guidance on the use of human embryonic and fetal tissue transplantation’, Barcelona, Spain, February 27-29, 2000
- Presentation on 'Recommendations for the ethical guidance in EFTT - requirements of pre-clinical and clinical studies', Workshop EC BIOMED project ‘Ethical guidance on the use of human embryonic and fetal tissue transplantation’, Amsterdam, The Netherlands, October 26-28, 2000
- Presentation on Neurotransplantation at the Concluding Conference of Brain ELSA (Ethical, legal and social aspects of brain research), Paris, F, May 1999, also published on the CD outcome delivery of the EC Brain ELSA project published by Psicoanalisi Contro di Lorenzo Rossi, Rome, 2000

2001
- Presentation on 'Clinical neurotransplantation, an update on the ethical issues', 7th World Congress of Biological Psychiatry, Berlin, Germany, July 1-6, 2001
- Invited discussant at the 2-day EC life science discussion platform 'Stem cells, therapies for the future?', Brussels, December 18-19,2001
- Publication W. Dekkers and G. Boer 'Sham neurosurgery in patients with Parkinson's disease: is it morally acceptable?', J. Medical Ethics, 27 (2001)151-156

2001-2002
- Member of the Committee of the Dutch Health Council on 'Stem cells for transplantation purposes' (together with P. Borst, chair, Amsterdam, P. Doevedans, Maastricht, A. Gittenberger-de Groot, Leiden, L. Markenstein, Utrecht, C. Mummery, Utrecht, M. Staal, Groningen, S. Weima, Utrecht, G. de Wert, Maastricht, G. Olthof, Den Haag en P. Bolthuis, secretary, Den Haag)

2002
- Publication 'Stem cells for tissue repair, research on therapy using somatic and embryonic stem cells', rapport published by the Dutch Health Council on June 27, 2002 (textual contributions)
- Publication 'Een Europese discussie over stamcellen voor therapie', a rapport about the 2-day EC life science discussion platform 'Stem cells, therapies for the future?', Brussels, December 18-19, 2001, Ned. Tijdschrift voor Geneeskunde, 146 (2002) 1242-1245
- Presentation 'An update of the NECTAR Guidelines for the use of prenatal tissues in view of the use of stem cells', 13th NECTAR Meeting, Amsterdam, 12-14 December 2002
- Presentation on 'The rationale for disease-dedicated core assessment protocols', 13th NECTAR Meeting, Amsterdam, 12-14 December 2002
- Co-organizer of Neurofederation Autumn Symposium 'Stem cells of and stem cells for the brain', Amsterdam, December 16, 2002 (with P. Lucassen, SILS, Univ. of Amsterdam, Amsterdam)
- Interview by Wim Rigter on 'Verkrijgen en opslaan voor de toekomst van humane embryonale stamcellen', 1 op de middag, NCRV, Radio 1, December 16, 2002 (broadcast)
- Publication G. de Wert, R.L.P. Berghmans, G.J. Boer, et al., Ethical guidance on human embryonic and fetal tissue transplantation: a European overview, Medicine, Health Care and Philosophy 5 (2002) 79-90 (writing co-author)
- Publication G.J. Boer and Håkan Widner, 'Clinical neurotransplantation: Core assessment protocol rather than sham surgery as control', Brain Research Bulletin, 58 (2002) pp 547–553

2003
- Member of the ad hoc National Committee ‘Tissues and Cells’ (ad-hoc advisory group on the issues of safety on the use of human cells), Den Haag
- Presentation on 'Neurotransplantation of fetal tissues, how and what?' Meeting ‘Gender Democratic Labyrinth’, University of Maastricht, Maastricht, 14 February 2003 (public meeting)
- Presentation 'Ethics surrounding the using stem cells for research and medicine' at an hearing on ins and outs of stem cell research organizes by NECTAR for the United European Left-Nordic Green Left (GUE-NGL) Group of the European Parliament, Brussels, November 11, 2003 (meeting with EU politicians)
- Statement G.M.W.R. de Wert en G.J. Boer 'Modelreglement Terbeschikkingstelling van foetaal weefsel', Ned Tijdschrift voor Geneeskunde, 147 (2003) 1341-1343


2003-2007
- Member Working Group ‘Intervening in the Psyche”, European Academy, Ahrweiler, Germany (together with Reinhard Merkel, chair, Hamburg D, Steffen Rosahl, Erfurt D, Bart Nuttin, Leuven B, Dirk Hartmann, Essen D, Jörg Fegert, Ulm D, and Thorten Gahlert, secretary, Bad Neuenahr-Ahrweihler D)

2004
- Publication 'Stamcellen voor hersenweefsel kan niet zonder embryo' in 'Factor XX: Vrouwen, Eicellen en Genen' (eds. M. Huijer and K. Horstman) Uitgeverij Boom, Amsterdam, 26 May 2004
- Presentation 'EU and national legislation: a view and an update', 15th NECTAR Meeting, Brussels, 2-4 December 2004
- Publication 'Ethics and politics of embryonic and fetal tissue transplants', Movement Disorder Society Newsletter, Spring 2004

2005
- Publication opinion 'Niets te verliezen: ALS-patiënten ondergaan omstreden Chinese neurochirurgie', Medisch Contact, January 28, 2005
- Publication 'Kwakzalverij', BioNieuws 3 (2005) (public weekly bulletin)

2006
- Publication 'Restorative therapies for Parkinson’s disease: ethical Issues', in 'Scientific and philosophical perspectives in neuroethics' (eds. J.J. Giordano and B. Gordijn),Cambridge University Press (2006) pp 12-49
- Publication 'Het gebruik van humane stamcellen, ethische en sociale aspecten' in 'Het Medisch Jaar 2005 (eds. J.N. Keeman, P.W. de Leeuw, J.A. Mazel en F.G. Zitman) Bohn Stafleu van Loghem, Houten NL (2006) pp 81-89
- Publication 'Restorative therapies for Parkinson's disease: ethical issues' in 'Restorative therapies in Parkinson's disease' (eds. P. Brundin and C.W. Olanow), Springer 2006 pp 12-49
- Presentation 'Introduction on the major issues of clinical trials in gene therapy' at the CLINIGENE kick-off meeting, Annecy F, March 31-April 3, 2006

2006-2007
- Chairman of the Ethical Review Board and Member of the Executive Board of CLINIGENE '
Quality and safety standards for clinical gene transfer', Network of Excellence of the European network for the advancement of clinical gene transfer and therapy (EC program). Project chair Odile Cohen-Haguenauer (Cachan, F)

2007
-
Co-organiser CLINIGENE/CONSERT think tank, The ethics of human clinical gene transfer: “On route to ethical recommendations for gene transfer clinical trials”, Geneva, Switzerland, April 2-3, 2007 (together with Odile Cohen-Haguenauer, Cachan F, Gerard Wagemaker, Rotterdam NL, Nancy King, Washington DC, USA)
- Presentation 'Sham-controlled double-blind study design is the gold standard in human research but is it always acceptable in experimental gene transfer? A plea for Core Assessment Protocols', CLINIGENE/CONSERT think tank, The ethics of human clinical gene transfer: “On route to ethical recommendations for gene transfer clinical trials”, Geneva, Switzerland, 2-3 April 2007
- Publication 'Neurotransplantation and gene transfer' in 'Intervening in the brain, changing psyche and society' (authors R.Merkel, G. Boer, J. Fegert, T. Gahlert, D. Hartmann, B. Nuttin and S. Rosahl), Ethics of Science and Technology Assessment, Vol 29, Springer, 2007 pp 59-115

2011
- Presentation 'CAP rather than SHAM', Workshop on Ethical and societal aspects of stem cell therapy in Parkinson's and Huntington's patients, Lund, Sweden, May 30-June 1, 2011

2013
- Presentation 'Bioethical aspects of stem cell research and use', Workshop 'Mobilizing stem cells: production and tourism in the human stem cell economy', Lund, Sweden, 17 October 2013

2016
- Expert Evaluator & Rapporteur in the Remote Ethics Assessment of 6 proposals submitted under the calls H2020-MSCA-RISE-2016, H2020-SMEINST-2-2016-2017 and ERC Advanced Grant 2015, DG Research & Innovation, EC Ethics and Research Integrity Sector, EC EU, Brussels

2017
- Reviewer at meeting of first year's progress of project H2020-FET-OPEN-686841-MAGNEURON funded by the EU H2020 programme for research and innovation, REA-Research Executive Agency, EC-EU, Saint-Josse-ten-Noode, March 7 (2017)

2018
- Member monitoring committee of the progress of project H2020-FET-OPEN-686841-MAGNEURON funded by the EU H2020 programme for research and innovation, REA-Research Executive Agency, EC-EU, Saint-Josse-ten-Noode, September 19 (2018)
- Remote ethics reviewer for Fast Track to Innovation Grant Preparations under EU panel topic HEALTH, Brussels, December 2018 (2 projects)