the belgian hvp node with attention to collaboration with dr congo node - thomy jl de ravel
TRANSCRIPT
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
LOVERVAL
Human Genetics Consultations by
8 Human Genetics Centres
GENK
Role Players in Belgium
“NODE” Belgian Society
for Human Genetics
Centres for Human/ Medical Genetics
Universities
High Council for Health
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
1. Setting Normative Function
• Laboratory Accreditation by early 2014
• Clinical Indications for each analysis
• Cross-border laboratory testing – per restrictive list
1. Setting Normative Function
• Laboratory Accreditation by early 2014
• Clinical Indications for each analysis
• Cross-border laboratory testing – per restrictive list
1. Setting Normative Function: Laboratory Accreditation
1. Setting Normative Function: Laboratory Accreditation
1. Setting Normative Function
• Laboratory Accreditation by early 2014
• Clinical Indications for each analysis
• Cross-border laboratory testing – per restrictive list
1. Setting Normative Function: Clinical Indications for each analysis
> 01 JAN 2013
1. Setting Normative Function
• Laboratory Accreditation by early 2014
• Clinical Indications for each analysis
• Cross-border laboratory testing – per restrictive list
Number of genes tested in each country
Orphanet (September 2011) – Mariana Jovanovic
1. Setting Normative Function: Cross-border laboratory testing – per WorkGroup BelMolGen
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
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
Cartoonpaviljoen 2014
Strand Casino Knokke
Zeedijk-Albertstrand 509 8300 Knokke-Heist
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
3. Sharing Knowledge
• Laboratory and Clinical expertise
– Local
– National
– International
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
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3. Sharing Knowledge: International/ National
BeSHG ANNUAL MEETING
4. Building Capacity
• Education and Training – Universities – BeSHG
• Developed and Developing worlds – BeSHG and CoSHG
• Global Future: Genomics & Genetics
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
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Belgian Node – DRCongo Node
4. Building capacity: Developed and Developing Worlds
Matrix for ASSESSING Genomic and Genetic Services in a COUNTRY
Kindly given by Helen Robinson & Tim Smith
Belgium DR Congo
4. Building capacity: Developed and Developing Worlds
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
Kinshasa DR Congo
27-29 May 2013
4. Building capacity: Developed and Developing Worlds
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
Thanks !