A recent study has revealed that between four to six million Nigerians carry the sickle cell trait, putting them at risk of developing sickle cell disease (SCD), which is now recognized as a major non-communicable disease in the country. The study, titled “A Comparative Study of Existing Sickle Cell Laws in Four States of Nigeria”, highlights the ongoing challenge of addressing this health issue and the inconsistencies in the enforcement of preventive laws.
The research, conducted by the Nguvu Collective, focused on the implementation of premarital genotype screening laws in four Nigerian states—Kaduna, Kano, Anambra, and Abia. These laws are meant to help prevent the spread of SCD by ensuring that couples know their genetic compatibility before marriage. However, the study found that enforcement of these laws has been problematic.
“Enforcement of the law across different states varies; some areas are not even aware of the existence of the law or its implementation, while others have limited enforcement,” the report stated, underscoring the inconsistent application of the laws designed to curb the spread of SCD.
Onor-Obassi Egim Tawo, a survivor of sickle cell disease and a Nguvu Change Leader from Cross River State, spearheaded the study. Tawo’s personal connection to the issue is significant, having lost her brother to the disease. Her advocacy aims to raise awareness about the devastating impact of SCD and the need for stronger preventive measures.
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The report pointed out that a lack of awareness and education about genetic blood disorders remains a major obstacle to the successful adoption of genotype screening programs in Nigeria. It also highlighted the role that cultural beliefs play in hampering the effectiveness of these laws. “These [socio-cultural beliefs] influence attitudes towards SCD and genotype screening. In many cultural norms, marriage and family lineages are emphasized over genetic compatibility,” the study noted.
The study also raised concerns about the legal and ethical implications of mandatory genotype screening laws. While these laws aim to reduce the prevalence of SCD and promote public health, they may inadvertently infringe on human rights and lead to discrimination. “There is a delicate balance between public health goals and individual freedoms, with debates ongoing about the best approach to implementing these laws without infringing on human rights,” the report explained.
To address the gaps in awareness and law enforcement, the study recommended several key actions. These include increasing public awareness campaigns, improving stakeholder capacity, investing in research on SCD, and sharing personal stories from those living with the disease to humanize the issue. Expanding access to affordable genotype screening services was also identified as a critical step in reducing the incidence of sickle cell disease.