An overview of medical genetics and data sharing in Malaysia

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.