SESSION VIHVP Country NodesThursday 2nd June

Malaysian Node of the Human Variome Project (MyHVP)

Prof. Zilflail AlwiHead, 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

Clinical Lab Clinical Geneticist Paediatricians Genetic Counselors

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Clinical Genetics in Malaysia

Clinical in Malaysia

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4

National Human Genetics Society

• National Human Genetics Society: [Name, President, Next Meeting]

i. Malaysian Society of Human Genetics (MSHG)ii. President: Prof. Zilfalil Alwiiii. 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

• 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

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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 & linkagei. ( 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.