The Belgian HVP Node with attention to collaboration with DR Congo Node - Thomy JL de Ravel

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  • 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
  • 6. 1. Setting Normative Function • Laboratory Accreditation by early 2014 • Clinical Indications for each analysis • Cross-border laboratory testing – per restrictive list
  • 7. 1. Setting Normative Function • Laboratory Accreditation by early 2014 • Clinical Indications for each analysis • Cross-border laboratory testing – per restrictive list
  • 8. 1. Setting Normative Function: Laboratory Accreditation
  • 9. 1. Setting Normative Function: Laboratory Accreditation
  • 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: Clinical Indications for each analysis > 01 JAN 2013
  • 12. 1. Setting Normative Function • Laboratory Accreditation by early 2014 • Clinical Indications for each analysis • Cross-border laboratory testing – per restrictive list
  • 13. Number of genes tested in each country Orphanet (September 2011) – Mariana Jovanovic 1. Setting Normative Function: Cross-border laboratory testing – per WorkGroup BelMolGen
  • 14. 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
  • 15. 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
  • 16. Cartoonpaviljoen 2014 Strand Casino Knokke Zeedijk-Albertstrand 509 8300 Knokke-Heist
  • 17. 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
  • 18. 3. Sharing Knowledge • Laboratory and Clinical expertise – Local – National – International
  • 19. 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
  • 20. 3. Sharing Knowledge: International/ National BeSHG ANNUAL MEETING
  • 21. 4. Building Capacity • Education and Training – Universities – BeSHG • Developed and Developing worlds – BeSHG and CoSHG • Global Future: Genomics & Genetics
  • 22. 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
  • 23. Belgian Node – DRCongo Node 4. Building capacity: Developed and Developing Worlds
  • 24. Matrix for ASSESSING Genomic and Genetic Services in a COUNTRY Kindly given by Helen Robinson & Tim Smith BelgiumDR Congo
  • 25. 4. Building capacity: Developed and Developing Worlds
  • 26. 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
  • 27. Kinshasa DR Congo 27-29 May 2013 4. Building capacity: Developed and Developing Worlds
  • 28. 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
  • 29. Thanks !