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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
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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)
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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
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Member of the board of the Network of European CNS Transplantation And
Regeneration (NECTAR)
1991-1998
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Ethics coordinator/Chairman subcommittee of NECTAR on
"Ethical guidelines in experimental and clinical neurotransplantation"
1992
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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)
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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
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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
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Interview by Maartje van Weegen on the Ins and outs of neurografting in
Parkinson's disease patients, NOVA, October 15, 1993 (TV)
1994
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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)
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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
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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
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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
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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
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Presentation on 'The use of human fetal tissue for medical purposes',
National Health Council Meeting, Utrecht, June 1997
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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
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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
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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)
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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)
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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
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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
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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
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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
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Presentation on 'Clinical neurotransplantation, an update on the ethical
issues', 7th World Congress of Biological Psychiatry, Berlin, Germany,
July 1-6, 2001
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Invited discussant at the 2-day EC life science discussion platform
'Stem cells, therapies for the future?', Brussels, December 18-19,2001
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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
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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
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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)
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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
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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
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Presentation on 'The rationale for disease-dedicated core assessment
protocols', 13th NECTAR Meeting, Amsterdam, 12-14 December 2002
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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)
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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)
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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)
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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
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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
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Presentation on 'Neurotransplantation of fetal tissues, how and what?'
Meeting ‘Gender Democratic Labyrinth’, University of Maastricht,
Maastricht, 14 February 2003 (public meeting)
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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)
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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
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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
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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
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Presentation 'EU and national legislation: a view and an update', 15th
NECTAR Meeting, Brussels, 2-4 December 2004
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Publication 'Ethics and politics of embryonic and fetal tissue
transplants', Movement Disorder Society Newsletter, Spring 2004
2005
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Publication opinion 'Niets te verliezen: ALS-patiënten ondergaan
omstreden Chinese neurochirurgie', Medisch Contact, January 28, 2005
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Publication 'Kwakzalverij', BioNieuws 3 (2005) (public weekly bulletin)
2006
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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
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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
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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
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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
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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
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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)
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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
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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
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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
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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
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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
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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)
2019
- Remote ethics reviews for EU Executive Agency
for Small and Medium-sized Enterprises (EASME), H2020-EIC-FTI, Brussels,
July 2019 (2 projects)
- Remote Fast Track Ethical reviews of Innovation Grants, topic Health, EU H2020-EIC-FTI-2018-2020,
Brussels, January & June 2019 (6 projects)
2020
- Remote ethics review for EU Research Executive
Agency (REA), H2020-MSCA-IF, Brussels, December 2020-January 2021 (25
projects)
2021
- Member Ethics Assessment Panel for EU Research
Executive Agency (REA), H2020-MSCA-COFUND 2016 & H2020-MSCA-IF 2020,
Brussels, March 2021 (4 projects)
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