Thalassemia Screening Is Mandatory In This Country?

This unique public health policy highlights how seriously the country is tackling Thalassemia and protecting future generations.

Meanwhile in Malaysia, there have also been ongoing discussions on whether Thalassemia screening should be made compulsory before marriage registration, as it is one of the most common inherited genetic disorders in the country, particularly among the Malay, Kadazan-Dusun and Chinese communities.

Thalassemia is a genetic blood disorder that affects the body’s ability to produce healthy haemoglobin.

Haemoglobin plays a vital role in carrying oxygen throughout the body. When it is not produced effectively, it can result in:

• chronic anaemia
• persistent fatigue and weakness
• delayed growth in children
• serious complications in severe cases

The severity of Thalassemia can vary from mild to life threatening, depending on the type and genetic inheritance.

In Maldives, couples must undergo Thalassemia screening as part of the legal marriage process. This policy was introduced due to the high prevalence of Thalassemia carriers within the population, creating a significant national health concern.

According to data shared during the World Health Organization Regional Director’s speech at the launch of the Thalassemia Prevention and Control Plan for Maldives on 15 October 2024, Maldivian Blood Services reported that around 16% of the population are affected by Thalassemia.

This places Maldives among the countries with the highest carrier rates globally.

By making Thalassemia screening mandatory, the country aims to:

• reduce the number of babies born with severe Thalassemia
• increase awareness among couples before marriage
• encourage informed and responsible family planning

This approach has proven to be a proactive step in reducing long term healthcare burden.

Although the prevalence of Thalassemia in Malaysia is not as high as in Maldives, it remains one of the most common inherited genetic disorders in the country. It is estimated that around 4.5% to 6.8% of Malaysians are Thalassemia carriers.

It is more commonly seen among the Malay, Kadazan-Dusun, and Chinese communities. Because Thalassemia can be passed down genetically from parents to children, many carriers may not realise they carry the gene until they:

• undergo Thalassemia screening
• experience repeated miscarriages related to genetic abnormalities
• have a child affected by Thalassemia

Thalassemia is inherited from parents through genes, meaning it is passed from one generation to the next.

Here is a simple breakdown:

If one parent is a carrier, the child may also become a carrier but usually will not have severe symptoms

If both parents are carriers, there is:

• 25% chance the child is affected
• 50% chance the child is a carrier
• 25% chance the child is completely unaffected

This is why screening before marriage or pregnancy is highly recommended, especially in regions with higher carrier rates.

Thalassemia is generally classified into 2 main types:

1. Alpha Thalassemia

• Caused by inactivation or missing alpha globin chains
• Severity ranges from mild to severe
• The most severe form is often fatal

2. Beta Thalassemia

• Caused by mutations in the beta globin gene
• Beta Thalassemia Minor: Usually a carrier state with little to no symptoms
• Beta Thalassemia Major: A severe condition that often requires lifelong blood transfusions

Yes, Thalassemia carriers can marry.

Being a carrier does not prevent someone from building a relationship or having the fruit of their love. However, understanding the genetic risks is essential.

If both partners are carriers, there is a 25% chance of having a child with Thalassemia Major in every pregnancy.

Because of this, premarital screening and genetic counselling are strongly encouraged to help couples make informed decisions.

In the past, this situation posed significant challenges.

Today, medical advancements have changed that completely.

Couples who are both Thalassemia carriers can still have a healthy baby through IVF combined with PGT-M. This means having a safe and hopeful path towards their own baby is now possible.

Pre-implantation Genetic Testing for Monogenic Disorders, known as PGT-M, is an advanced technique used alongside IVF to help prevent genetic conditions like Thalassemia.

How PGT M works?

• Eggs and sperm are used to create embryos in a laboratory
• Each embryo is carefully tested for Thalassemia
• Only embryos without the condition are selected for transfer

Click here to learn more on how PGT-M works in Sunfert.

Benefits of PGT M:

• Reduces the risk of having a child affected by Thalassemia
• Supports safer and more informed pregnancy planning
• Provides reassurance for couples with genetic concerns

This approach has helped many couples move forward with greater confidence and peace of mind.

If you are facing fertility challenges, start with a consultation with our specialists. We will guide you through your fertility journey with expertise and compassionate care. 

Make an appointment with our Fertility Specialist today and take the next step toward your parenthood goals.