1. The Belgian HVP Node
with attention to collaboration with DR Congo Node
Thomy JL de Ravel
President
Belgian Society of Human Genetics
Fifth International Biennial HVP Meeting
UNESCO HQ, Paris, France. 20 May 2014

2. Kingdom
of
Belgium

3. LOVERVAL
Human Genetics Consultations
by
8 Human Genetics Centres
GENK

4. Role Players in Belgium
“NODE”
Belgian Society
for
Human Genetics
Centres for
Human/ Medical Genetics
Universities
High Council for Health

5. Workgroups
BeSHG Workgroup on Training and Accreditation
BeSHG Workgroup on Constitutional Post- and Prenatal (Molecular) Cytogenetics (BelCoCyt)
BeSHG Cytogenetic Group in Hematology & Oncology (BCG-HO)
BeSHG Workgroup on Molecular Genetics (BelMolGen)
BeSHG Workgroup on the recognition of the Medical Genetic Laboratory Supervisor
BeSHG Workgroup Permanent Education Course in Human Genetics
BeSHG Workgroup “Genetics Laboratory Technicians”
BeSHG Workgroup Clinical Geneticists
http://www.beshg.be/
HVP node

9. 1. Setting Normative Function
• Laboratory Accreditation by early 2014
• Clinical Indications for each analysis
• Cross-border laboratory testing
– per restrictive list

10. 1. Setting Normative Function
• Laboratory Accreditation by early 2014
• Clinical Indications for each analysis
• Cross-border laboratory testing
– per restrictive list

11. 1. Setting Normative Function: Laboratory Accreditation

12. 1. Setting Normative Function: Laboratory Accreditation

13. 1. Setting Normative Function
• Laboratory Accreditation by early 2014
• Clinical Indications for each analysis
• Cross-border laboratory testing
– per restrictive list

14. 1. Setting Normative Function: Clinical Indications for each analysis
> 01 JAN 2013

15. 1. Setting Normative Function
• Laboratory Accreditation by early 2014
• Clinical Indications for each analysis
• Cross-border laboratory testing
– per restrictive list

16. Number of genes tested
in each country
Orphanet
(September 2011) – Mariana Jovanovic
1. Setting Normative Function: Cross-border laboratory testing – per WorkGroup BelMolGen

17. 2. Behaving Ethically
• Ethical, legal, social issues - ELSI
– Public Forums
• Ethics Committees
– University
– Hospital
– Multidisciplinary Reviews
– Think tanks eg Metaforum
• Consultation fee for Genetic Counselling
– tiered system = social support

18. Professor Gert Matthijs
Head, Molecular DNA Lab
Centre for Human Genetics, Leuven
Co-ordinator, Workgroup,
Total Genome Analysis
Professor Joris Vermeesch
Head, Cytogenetics and Genomics Core
Centre for Human Genetics, Leuven
Co-ordinator, Workgroup,
Total Genome Analysis
- The patient versus the healthy individual.
- To whom does my genome belong? Exclusively the patient, his Family, his Community?
- To what aspects of the genome does the patient/individual have rights?
- Who has the responsibility to give the requested information,
and what about incidental findings/ unsolicited information?
- What information, should the employer, insurance, and health authorities be able to ask?
- Can an individual freely ask to have his genome sequenced?
- How accessible should an individual’s data be to research?
Metaforum Leuven, interdisciplinary think tank
2. Behaving ethically: Public forums and Think tanks

19. Cartoonpaviljoen 2014
Strand Casino Knokke
Zeedijk-Albertstrand 509
8300 Knokke-Heist

20. 2. Behaving ethically: Consultation fee for Genetic Counselling – tiered system = social support
Genetic Counselling/ Consultations
CONVENTION with BOARD of MEDICAL INSURANCES
Simple SINGLE consultation (outside convention)
STANDARD Genetic Counselling
- 2 clinical geneticist - consultations
- genetic counsellor consultation
COMPLEX Genetic Counselling
- 2 clinical geneticist - consultations
- genetic counsellor consultation
- clinical psychologist consultation
$
$$$$
$$
> 01 JAN 2013

21. 3. Sharing Knowledge
• Laboratory and Clinical expertise
– Local
– National
– International

22. Workgroups
BeSHG Workgroup on Training and Accreditation
BeSHG Workgroup on Constitutional Post- and Prenatal (Molecular) Cytogenetics (BelCoCyt)
BeSHG Cytogenetic Group in Hematology & Oncology (BCG-HO)
BeSHG Workgroup on Molecular Genetics (BelMolGen)
BeSHG Workgroup on the recognition of the Medical Genetic Laboratory Supervisor
BeSHG Workgroup Permanent Education Course in Human Genetics
BeSHG Workgroup “Genetics Laboratory Technicians”
BeSHG Workgroup Clinical Geneticists
http://www.beshg.be/
3. Sharing Knowledge: National
x8
x4
x4
x4
x4

24. 3. Sharing Knowledge: International/ National
BeSHG ANNUAL MEETING

30. 4. Building Capacity
• Education and Training
– Universities
– BeSHG
• Developed and Developing worlds
– BeSHG and CoSHG
• Global Future: Genomics & Genetics

31. Workgroups
Minutes available upon request
BeSHG Workgroup on Training and Accreditation
BeSHG Workgroup on Constitutional Post- and Prenatal (Molecular) Cytogenetics (BelCoCyt)
BeSHG Cytogenetic Group in Hematology & Oncology (BCG-HO)
BeSHG Workgroup on Molecular Genetics (BelMolGen)
BeSHG Workgroup on the recognition of the Medical Genetic Laboratory Supervisor
BeSHG Workgroup Permanent Education Course in Human Genetics
BeSHG Workgroup “Genetics Laboratory Technicians”
BeSHG Workgroup Clinical Geneticists
http://www.beshg.be/
4. Building capacity: Education and Training
x8

32. Belgian Node – DRCongo Node
4. Building capacity: Developed and Developing Worlds

33. Matrix for ASSESSING Genomic and Genetic Services in a COUNTRY
Kindly given by Helen Robinson & Tim Smith
BelgiumDR Congo

34. 4. Building capacity: Developed and Developing Worlds

35. Principal, UniKin
President, Governing Board, DRC Universities
Minister, Higher Education
Cabinet Consultant, Ministry Health
President, CoSHG / Professor Human Genetics
Director, Research Institute
Head, Paediatrics, UniKin
4. Building capacity: Developed and Developing Worlds
ROLE PLAYERS

36. Kinshasa
DR Congo
27-29 May 2013
4. Building capacity: Developed and Developing Worlds

38. The Role of HVP within a Country
The Belgian Node
Thomy JL de Ravel de l’Argentière, President, BeSHG
Clinical Geneticist, Univ Hosp Leuven, University of Leuven
21 NOV 2013 SIMPOSIO 4: The Human Variome Project
Aida Falcon de Vargas
4. Building capacity: Developed and Developing Worlds

39. Thanks !