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Project July 18, 2023

Love in the Time of Sickle Cell Anemia



Marriage is one of the most important decisions that most people in the world make today, and having children is often the inevitable next step. But what if you found someone to marry and start a family with—but then realized your children had a 25% chance of being so sick they would be disabled for their entire lives?

You could very reasonably roll the dice with that 75% chance that your child will be fine. Or you could decide not to have children at all, though that may be hard to explain in your traditional community. Or you might decide that the 25% risk is simply not worth it, and break up—maybe with the love of your life. There's no right answer, and many sad ones.

This is the ethical dilemma faced by millions of people in the world, and it is poignantly reflected through the disease of sickle cell anemia, which is extremely prevalent in West Africa.

Sickle cell anemia (SCA) is a heritable blood disorder that warps the shape of red blood cells and leaves victims susceptible throughout their lives to sudden debilitating attacks of pain, chronic discomfort, and all manner of infections (meningitis, malaria, osteomyelitis, etc.). The only proven treatment is a complete bone marrow transplant, which is nearly impossible to access in most of sub-Saharan Africa. SCA in Nigeria is, by and large, not just a life sentence for the patient, but for their caregivers too.

The science behind the inheritance of this congenital disease is straightforward: You must get a copy of the disease gene from both parents, i.e., have an “SS” genotype. If you don’t have any copies of the gene, your genotype is “AA.” And if you are healthy but carry a sickle cell gene from one of your parents, your genotype is “AS.” Fully 24% of everyone in Nigeria, the most populous country in Africa (206 million people and counting) is an “AS” carrier.

Genetic testing for SCA has become widely available over the last decade. That means millions of Nigerians now face some version of the above dilemma. This project aims to bring this to life through a feature for Harper's Magazine.

This story is many things, but among them, it is an unusually cut-and-dry version of a dilemma nearly all of us will have to confront in this century, in the age of 23andMe. What degree of genetic risk is acceptable to pass on to your future children? How much should you risk for love and partnership?


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