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

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

Kingdom of

Belgium

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

x8

x4

x4

x4

x4

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

x8

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 !