Malaysian Node of the Human Variome Project (MyHVP)

Prof. Zilflail Alwi

Head, Malaysia Node of the Human Variome Project

SESSION VI
HVP Country Nodes
Thursday 2nd June
 Malaysia: a snapshot

Clinical Genetics in Malaysia

>1000
400
350
300
250
200
150
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50 30 15
10
0
Clinical Lab Clinical Geneticist Paediatricians Genetic
Counselors

Clinical in Malaysia

• 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
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 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

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HVP Country Node: MyHVP Organization
Structure of
MyHVP
• 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
 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

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 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.