Nigeria has spent decades talking about sickle cell disease. Schools, churches, hospitals and public health campaigns have repeatedly encouraged people to know their genotype before marriage. Awareness has grown significantly compared to previous generations, and genotype compatibility has become an important consideration for many couples planning a future together.

Yet Nigeria continues to record the highest burden of sickle cell disease in the world.

According to health experts, an estimated 150,000 babies are born with sickle cell disease in Nigeria every year, while about 40 million Nigerians are carriers of the sickle cell trait. Despite advances in awareness and education, the number of children born with the condition remains stubbornly high.

That contradiction has raised an important question: If more Nigerians understand the risks associated with incompatible genotype pairings, why does the country continue to record such a large number of new cases?

Part of the answer lies in familiar challenges such as limited access to genetic counselling, late testing and poor uptake of preventive healthcare services. However, experts are increasingly drawing attention to another issue that receives far less public attention: the reliability of genotype testing itself.

As the world commemorates World Sickle Cell Day, concerns are growing that inaccurate laboratory results, poor quality control systems and weak regulation of testing facilities may be contributing to preventable cases of sickle cell disease across the country.

For some families, the consequences have been life-changing.

Recent reports have highlighted cases of Nigerians who received genotype results years before marriage, only to later discover that the information was incorrect after having children diagnosed with sickle cell disease. Others have reported receiving conflicting results from different laboratories, leaving them uncertain about their true genotype status.

The growing concern is not simply whether Nigerians are getting tested. It is whether they can trust the results they receive.

The hidden problem behind genotype testing

Sickle cell disease is an inherited blood disorder that affects haemoglobin, the protein responsible for carrying oxygen throughout the body. The condition occurs when a child inherits abnormal haemoglobin genes from both parents.

Medical experts have long maintained that sickle cell disease is largely preventable through informed reproductive choices. However, prevention depends heavily on accurate genotype testing.

Professor Aisha Kuliya-Gwarzo, Clinical Director of Haematology at the African Medical Centre of Excellence in Abuja, notes that many of the challenges surrounding genotype testing stem from poor laboratory practices and outdated diagnostic methods.

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According to experts, inaccurate results can arise from low-quality testing procedures, inadequate equipment, poor quality assurance systems and insufficient technical expertise. Testing conducted during or shortly after blood transfusions can also affect results and create confusion.

Professor Obiageli Nnodu, Director of the Centre for Sickle Cell Research and Training in Africa at the University of Abuja, has warned that poor laboratory quality assurance remains a major challenge. She revealed that in one paediatric clinic reviewed by researchers, about 40 per cent of patients living with sickle cell disease had incorrect laboratory results.

Health professionals argue that while genotype screening has become more common, the systems responsible for delivering those results have not always kept pace with growing demand. In many cases, laboratories lack the oversight, equipment and quality control measures needed to guarantee consistent accuracy.

The Association of Medical Laboratory Scientists of Nigeria has also raised concerns about the proliferation of poorly regulated laboratories and substandard testing materials.

According to the association, many Nigerians receive genotype reports from facilities that may not possess the capacity, expertise or equipment required to perform reliable haemoglobin testing.

The consequences can extend far beyond a laboratory report.

Families may make major life decisions based on inaccurate information. Relationships and marriages have reportedly broken down after conflicting genotype results emerged years later. More importantly, children may be born with sickle cell disease despite parents believing they had taken the necessary preventive steps.

Why awareness alone is not enough

Nigeria’s sickle cell challenge is often discussed in terms of awareness, but experts say awareness without reliable testing can only achieve so much.

Over the years, public education campaigns have successfully encouraged more Nigerians to learn about genotype compatibility before marriage. Yet significant gaps remain in access to quality testing, genetic counselling and early diagnosis.

Many health advocates believe genotype screening should begin much earlier, rather than waiting until adulthood or marriage. Earlier testing would allow young people to understand their status long before making reproductive decisions.

There are also growing calls for stronger regulation of laboratories, standardised testing protocols and mandatory quality assurance systems across the healthcare sector. Experts argue that improving the accuracy of genotype testing may be one of the most effective ways to reduce the country’s sickle cell burden. The need is particularly urgent given the scale of the challenge.

Nigeria accounts for the largest number of sickle cell births globally, and many children born with the condition continue to face significant barriers to diagnosis and treatment. Health experts estimate that nearly half of affected children may not live beyond their fifth birthday due to delayed diagnosis, limited access to healthcare and inadequate treatment.

For families already living with the condition, the burden is often emotional, physical and financial. Many patients continue to pay for treatment out of pocket, placing additional pressure on households already struggling with rising healthcare costs.

World Sickle Cell Day is intended to raise awareness about the disease and improve support for those living with it. In Nigeria, however, it also serves as a reminder of a deeper challenge.

Knowing your genotype remains one of the most important steps in preventing sickle cell disease. But as experts continue to warn, that knowledge is only as valuable as the accuracy of the test behind it.

Cynthia Nwanonyiri