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The MyGenom Project is an effort to understand the genetic makeup of Malaysians. It’s our country’s first large-scale study of population genomics, which means sequencing the DNA of Malaysian citizens from different races and ethnicities. In Phase I, 2,400 genomes will be sequenced from healthy Malaysian individuals, with the goal of reaching 10,000 genomes in Phase II. Over time, this project will create a genomic dataset that reflects the diversity of our population and will be the key to bringing Precision Medicine to Malaysia.
The diversity of the human population means we have a variety of different characteristics and traits, and most of these can be traced back to the composition of our genes and DNA. This also means that people from different countries with different ethnic groups would differ from Malaysians; something that is readily apparent to all of us .These phenotypic characteristics range from height, skin colour, hair colour, cognitive abilities, personality traits, propensity for non-communicable diseases (NCDs), metabolism of food/drugs, and many more.
The project aims to define the genomic “baseline” of the Malaysian population i.e., provides a reference genomic dataset that represents the diversity of the Malaysian population. By understanding the genetic variations of the Malaysian individuals from different ethnic groups, we can confidently identify genetically linked disease-associated mutations, especially those on non-communicable diseases. Thus, implementing precision medicine within the healthcare system and initiating the development of a Precision Medicine Ecosystem in Malaysia (in the near future).
By understanding the unique genetic makeup of Malaysians, we can enhance medical care and prevent diseases more effectively. Knowing the common genetic differences among Malaysians can make it much easier and faster to diagnose rare genetic diseases, especially for patients in Malaysia. This is particularly important for newborns and young children who are seriously ill but don’t yet have a clear diagnosis. With this information, doctors can provide the right treatment sooner, potentially saving lives.
Additionally, understanding genetic risks for common diseases can help people make smarter health choices. For example, they might decide to visit the doctor more often, choose the right medication, or adjust their diet, lifestyle and exercise based on what works best for their genetic makeup. This can help prevent diseases like diabetes, cancer, and Alzheimer’s, making it easier to stay healthy.
The MyGenom project is an inter-ministry collaboration, primarily between the Ministry of Science, Technology, and Innovation (MOSTI) and the Ministry of Health (MOH). The executing project teams are from the National Institutes of Biotechnology Malaysia (NIBM) for MOSTI, and from the National Institutes of Health (NIH) from MOH.
Our body is made of 10 to 100 trillion cells. Hidden inside almost every cell in our body is a chemical called DNA. Genome is the entire set of genetic information found in cells.
The genome provides all the information needed for us to grow and function, as well as determining some of our features, such as eye colour, hair colour and height. Among humans, although the DNA is 99.9% similar, a variation of only 0.1% can make a lot of differences.
And thus, genomics is an area within biology that focuses on genome structure, evolution, function and mapping. It involves the comprehensive study of the entire genetic material of organisms (the genome), including all genes at the DNA level, as well as the cellular or tissue level, to understand how genes and their interactions contribute to various biological functions and traits.
Sequencing is the process of determining the complete DNA sequence of an organism’s genome. This includes identifying the precise order of nucleotides (building blocks) within a DNA molecule. By mapping out the entire genome, researchers can gain detailed insights into the genetic makeup of an organism, which can be used for various applications such as studying evolutionary history, strategising prevention and screening programs based on genetic evidence, and also developing and choosing the most effective treatment to achieve precision medicine.
Precision medicine is a concept that involves tailoring medical treatment to the characteristics of each patient. Instead of using a one-size-fits-all approach, it considers factors like a person’s genes, environment, and lifestyle to provide more effective care. In the context of genes and genetics, people from different ethnic backgrounds can have different genetic variations that affect their health. For example, certain genetic traits are more common in specific ethnic groups, which can influence how prevention and surveillance of diseases are being carried out. In cancer, differences in genetic factors may lead to different responses to targeted therapies. Precision medicine takes these differences into account, aiming to provide the most effective treatment for each person.
Precision medicine can be applied to the individual via means of specific screening e.g. testing for genetic markers, but the observations made of specific ethnic ancestries can be generally applied for all of its members. For example, the dosage for warfarin , the most commonly prescribed anticoagulant, is significantly different between Caucasian (requiring the highest mean daily dose) and Asian patients (the lowest mean daily dose). This fact informs how patients of different ancestries will be prescribed different dosages of warfarin to ensure maximal effectiveness.
While this example still remains true to date, advancements in genomic studies nowadays have revealed that while individuals of the same ethnicity may have more similarities in genetic background, they may still be different in disease-related genetic factors and sometimes disease-related genetic factors are also commonly shared among individuals of different ethnicities (for example, genetic factors that influence the lifetime risk of developing breast cancer). In view of this, the MyGenom study is designed to be inclusive and able to capture the diverse genetic landscape of Malaysia. It will serve as a cornerstone for future studies to investigate the risks of diseases, drug efficacy and potential side effects as well as to develop guidelines that ensure more effective disease prevention and treatment for all Malaysians, though we may have different disease-associated genetics, lifestyle, and socioeconomic status.
Yes, many countries all around the world have similar population genomics initiatives. For examples, Vietnam had sequenced 1,000 individuals while South Korea had sequenced 10,000 individuals. Singapore is moving towards sequencing 500,000 (in their Phase III), while Japan is expanding to at least 150,000 individuals. Countries in the Europe, United States, United Kingdom, and United Arab Emirates are heading towards generating millions of genomes for their populations.
Self-reported apparently healthy Malaysian adults aged 18 years old and above, of both genders and all ethnicities are welcome to join the MyGenom Project as study subjects. Exclusion criteria include clinical diagnosis of cardiovascular diseases, diabetes mellitus, chronic kidney disease, malignancies, chronic inflammatory disorders, chronic infections, genetic diseases, apparent facial dysmorphisms due to genetic diseases, history of drug or alcohol abuse in the last 3 years, pregnancy and inability or unwillingness to provide consent.
Family members of the same generation (i.e. siblings) cannot join together as study subjects of the project. Family members of different generations (i.e. parents, children, aunties or uncles) can join together as study subjects.
Participation can be made through scheduled appointments or walk-ins at one of the designated recruitment sites. Information can also be obtained via MOH community programmes or other promotional announcements.
Currently, our recruitment centres are the following:
With recruitment at Sabah and Sarawak to be determined shortly.
No, participation is not mandatory, but voluntary. Tokens of appreciation will be provided for participants.
Yes, participants may withdraw at any time. If consent is withdrawn, any unused sample that has not been processed in future research will be destroyed. Any sample where the participant’s personal identifying information has been removed and sent to other investigators is considered as completely used and cannot be destroyed when the participant withdraws their consent. Any information resulting from the use of their sample in future research will continue to be used in that research.
The participant can withdraw from the study at any time without giving a reason. However, the benefits of the study will be decreased if people withdraw from it, so it is encouraged to inform the participant to discuss any concerns with any of the research team member in advance prior to confirming decision to withdraw from the study.
To discuss withdrawing from the study, the participant may call the following number 03-33627744 as stated in the Participant Information Sheet.
In general, there will be four types of data collected: Health screening test results, physical measurements, information from questionnaires, and genomic data from sequencing.
The collective data garnered from the MyGenom project will be a cornerstone for the implementation of Precision Medicine for the benefit of Malaysian citizens. This will be achieved through better understanding of the population’s unique genetic diversity and how it relates to manifestation of human health.
The data from the MyGenom project will be managed by a Data Access Committee, which will ensure that the information is shared and accessed responsibly. Researchers who have the necessary approvals can use this data for their studies, but it will be shared confidentially, ensuring the privacy and rights of the MyGenom participants.
Personal data will be anonymized to protect each person’s privacy. Tracing the information back to the individual will not be accessible except for a limited number of investigators. All genomic and phenotypic (physical characteristics, blood results, etc) data will be stored in secure databases in NIBM and NIH.
Data from the MyGenom project will be kept safe with strong security measures to protect privacy and ensure data integrity. This data will be stored in mirror sites in an on-premise database (MGVI-NIBM) & in the cloud (NIH). Among the security measures are the mirror site back-ups, anonymization of personal identifiers, encryption and password protection, and firewall security systems.
Data from the MyGenom project may be shared with other researchers and investigators, provided explicit approval is obtained from the MyGenom Data Access Committee. As part of the approval process, researchers must ensure and acknowledge that the data will not be used in any way that could lead to discrimination.
Blood samples will stored for at least 10 years in the NIH Biobank. The data and information are projected to be stored in perpetuity for the long-term benefit of the country
By participating in this project, participants have the direct benefit of a health screening test; inclusive of physical and blood tests. The test results will include full blood count, HbA1c, renal profile, lipid profile, thyroid profile, and liver function.
Furthermore, as the MyGenom project is a long-term initiative with massive implications for the implementation of precision medicine in the country, participation is a great opportunity to contribute to the well-being of future generations of Malaysians.
Risks are minimal as the only invasive procedure is taking of the blood. There may be minor pain and/or bruising at the site of the needle prick which usually will disappear within a few days.
The blood test results, upon review by MyGenom medical doctors, will be shared with the participant, and if applicable, may be the basis for referral. Body composition measurements and also heart rhythm report will also be shared.
If there are any abnormalities in the participant’s heart rhythm report, a referral for further investigation will also be provided. We will be examining the participant’s genes for pathogenic variants as outlined in the American College of Medical Genetics and Genomics (ACMG) guidelines. If any of such variants are detected, we will discuss the need for further evaluation with our Consultant Geneticists and arrange for a consultation if necessary. However, it is important to note that no notification does not imply negative gene test results, as not all genes could be tested for all samples due to technical limitations. The MyGenom study team will not be liable to report underlying genetic findings (if any) due to this technical limitation in a research setting.
The results of the blood test will be relayed through the email provided by the participant. If necessary, the MyGenom doctors may also perform a teleconsultation with the participants.
Individual results will be private and anonymised to protect the participants. The collective data (for example, summaries of including blood test results, questionnaire results, and genomic data) may be published as scientific results in journals, conferences and/or as public dissemination.
The blood test results, similar to the results of any personal health screening, may disclose symptoms or characteristics of diseases or illnesses which may affect the individual’s health insurance in particular. As the genomic data is anonymised and not shared by default, it will not affect insurance or employment status.
This project will be in compliance with the ethical principles outlined in the Declaration of Helsinki and Malaysian Good Clinical Practice, strictly following the confidentiality legislation and requirements in the handling of personal information.
The MyGenom project has been approved by the Medical Research and Ethics Committee (MREC) with the National Medical Research Register (NMRR) ID 24-01338-QRM.
Consent would be obtained prior to participation. Two informed written consents will be used for enrolment; one for the current study and another for biobanking.
If there are unexpected findings, the clinicians will evaluate whether additional clinical investigation including clinically certified laboratory tests is required for confirmation and/or the necessity to recommend further referral for the participants.
The MyGenom team can be contacted through the email addresses mygenom@moh.gov.my or mygenom@nibm.my. The Project Coordinators can also be reached by phone: Dr. Adiratna Mat Ripen (IMR-NIH) at 03-33627744 or Ts. Dr. Ryia Illani Mohd Yunos (MGVI-NIBM) at 03-89267446.
Participants are welcome to engage with our personnel at each recruitment site, who will be happy to provide any explanation or discussion. For further information, the aforementioned contact details can be used. In the near future, a publicly available website and dashboard will be provided for general information.
