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SESSION VI
HVP Country Nodes
Thursday 2nd June
Malaysian Node of the Human Variome Project (MyHVP)
Prof. Zilflail Alwi
Head, Malaysia Node of the Human Variome Project
Malaysia: a snapshot
• Genetic testing & genetic healthcare services:
[How are they funded?]
i. Funding from Government under Ministry of Health (MOH)
ii. University/Institution funded
iii. Private laboratory
30
10
>1000
15
0
50
100
150
200
250
300
350
400
Clinical Lab Clinical Geneticist Paediatricians Genetic
Counselors
Clinical Genetics in Malaysia
Clinical in Malaysia
3
4
National Human Genetics Society
• National Human Genetics Society:
[Name, President, Next Meeting]
i. Malaysian Society of Human Genetics (MSHG)
ii. President: Prof. Zilfalil Alwi
iii. Next meeting:
i. Annual General Meeting: Feb 2017
ii. Exco Meeting 1: July 2016
iii. Exco Meeting 2: Dec 2016
5@variomeproj
#HVP6
HVP Country Node: MyHVP Organization
• Year established: 2010
• Funding: funded by Universiti Sains Malaysia
• Links with NHGS: Supported by Professional bodies;
i. Malaysian Genetic Society (PGM)
ii. Malaysian Society of Human Genetics (MSHG)
iii. Medical Genetic Society of Malaysia (MGSOM)
• Ethical framework, privacy, consent:
– Ethical framework: in progress. Cooperate with
Institute of Islamic Understanding (IKIM)
– Privacy: Database accessibility is for local
Researchers only.
– Consent: Ethical approval for sampling was
approved by Universiti Sains Malaysia
Structure of
MyHVP
HVP Country Node: Technical
• National data repository:
http://hvpmalaysia.kk.usm.my/mhgvc/index.php
• Data available nationally: Polymorphism & Mutation database
• Data available internationally: Data is not ready for the
International applicants.
• Available:
– Data Collection Policy: Based on Ethic committee approval not available
online.
– Collection Agreement: Based on Ethic committee approval not available
online.
– Data Access Policy: was created in 2013.
– Data Ownership Policy: Not available
Database Access Policy for MyHVP
8@variomeproj
#HVP6
Progress, Plans and Problems
• Progress in the past 12 months:
i. Conference, seminar and Meeting
i. (co-organiser: HUGO's HGM 2015), BioGrid Workshop 2015, Seminar on Human Genetics
(co-organiser with MSHG), Second Meeting of HVP SEA Node).
ii. Knowledge transfer program
i. (send students to HVP SEA regional node for training in cutting edge bioinformatics
analysis; Bangkok)
iii. Public Engagements & Educational Activities
i. (EduVariome program)
iv. Networking & linkage
i. ( MoA with private Company , Sengenics Sdn. Bhd - a smart partnership).
v. Publication
i. (MyHVP Newsletter & Research Publications)
• Plan for the next 12 months:
i. Public Engagements & Educational Activities
i. (EduVariome Program)
ii. Networking & linkage
i. (Assist LIC contries to apply nternational grant)
iii. Publication
i. ( MyHVP newsletter & research publication s).
• Problems/barriers we face:
– Funding for continuing the MyHVP’s activities.

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HVP Country Node: Malaysia - Zilfalil bin Alwi

  • 1. SESSION VI HVP Country Nodes Thursday 2nd June Malaysian Node of the Human Variome Project (MyHVP) Prof. Zilflail Alwi Head, Malaysia Node of the Human Variome Project
  • 2. Malaysia: a snapshot • Genetic testing & genetic healthcare services: [How are they funded?] i. Funding from Government under Ministry of Health (MOH) ii. University/Institution funded iii. Private laboratory 30 10 >1000 15 0 50 100 150 200 250 300 350 400 Clinical Lab Clinical Geneticist Paediatricians Genetic Counselors Clinical Genetics in Malaysia Clinical in Malaysia
  • 3. 3
  • 4. 4
  • 5. National Human Genetics Society • National Human Genetics Society: [Name, President, Next Meeting] i. Malaysian Society of Human Genetics (MSHG) ii. President: Prof. Zilfalil Alwi iii. Next meeting: i. Annual General Meeting: Feb 2017 ii. Exco Meeting 1: July 2016 iii. Exco Meeting 2: Dec 2016 5@variomeproj #HVP6
  • 6. HVP Country Node: MyHVP Organization • Year established: 2010 • Funding: funded by Universiti Sains Malaysia • Links with NHGS: Supported by Professional bodies; i. Malaysian Genetic Society (PGM) ii. Malaysian Society of Human Genetics (MSHG) iii. Medical Genetic Society of Malaysia (MGSOM) • Ethical framework, privacy, consent: – Ethical framework: in progress. Cooperate with Institute of Islamic Understanding (IKIM) – Privacy: Database accessibility is for local Researchers only. – Consent: Ethical approval for sampling was approved by Universiti Sains Malaysia Structure of MyHVP
  • 7. HVP Country Node: Technical • National data repository: http://hvpmalaysia.kk.usm.my/mhgvc/index.php • Data available nationally: Polymorphism & Mutation database • Data available internationally: Data is not ready for the International applicants. • Available: – Data Collection Policy: Based on Ethic committee approval not available online. – Collection Agreement: Based on Ethic committee approval not available online. – Data Access Policy: was created in 2013. – Data Ownership Policy: Not available
  • 8. Database Access Policy for MyHVP 8@variomeproj #HVP6
  • 9. Progress, Plans and Problems • Progress in the past 12 months: i. Conference, seminar and Meeting i. (co-organiser: HUGO's HGM 2015), BioGrid Workshop 2015, Seminar on Human Genetics (co-organiser with MSHG), Second Meeting of HVP SEA Node). ii. Knowledge transfer program i. (send students to HVP SEA regional node for training in cutting edge bioinformatics analysis; Bangkok) iii. Public Engagements & Educational Activities i. (EduVariome program) iv. Networking & linkage i. ( MoA with private Company , Sengenics Sdn. Bhd - a smart partnership). v. Publication i. (MyHVP Newsletter & Research Publications) • Plan for the next 12 months: i. Public Engagements & Educational Activities i. (EduVariome Program) ii. Networking & linkage i. (Assist LIC contries to apply nternational grant) iii. Publication i. ( MyHVP newsletter & research publication s). • Problems/barriers we face: – Funding for continuing the MyHVP’s activities.