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Sickle cell disease (SCD) is often thought of as a condition that only affects Black people. That isn’t true. Although SCD disproportionately affects Black people, anyone can inherit the gene variants that cause the disease, according to the journal International Orthopaedics.
So does race determine who gets SCD? Not exactly. Ancestry can affect the likelihood, but it can’t tell you whether you actually have it.
Here’s a closer look at who’s most likely to have SCD, how ancestry affects risk, and whether white people can have the disease.
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No. Race doesn’t determine whether someone has SCD.
To have SCD, a person must inherit two gene variants that affect hemoglobin (the oxygen-carrying protein in red blood cells), one from each biological parent. It’s these inherited gene variants, not race, that determine whether someone has SCD.
At the same time, certain gene variants linked to SCD are more common among people whose ancestors came from specific parts of the world. This is one reason SCD is more common in some populations than others.
Ancestry refers to where a person’s biological family history traces back to, while race refers to the social group they identify with. That means being Black doesn’t automatically mean someone has SCD, and being white doesn’t rule it out.
Although certain ancestries can increase the likelihood of carrying a sickle cell variant, people from different ethnicities can have sickle cell trait (SCT). If you’re not sure about your sickle cell status, ask your healthcare provider about getting tested.
People from certain ancestries are more likely to have SCD than others. But anyone can inherit the combination of gene variants that causes SCD.
SCD is most common among people with sub-Saharan African ancestry. Across the Americas and elsewhere, SCD also affects communities whose family roots trace back to Africa.
Approximately 1 in 13 Black babies in the United States is born with SCT, and about 1 in 365 is born with SCD, according to Johns Hopkins Medicine. Historical migration helps explain why SCD is also found in Black communities outside Africa.
In the Caribbean and parts of North and South America, the forced migration of people from Africa during the Atlantic slave trade contributed to the spread of SCD among populations with African ancestry.
SCD can also occur among people with ancestry from parts of the Mediterranean, Middle East, and South Asia. This includes countries like India, Greece, Turkey, and Italy.
The prevalence of sickle cell gene variants also varies within these regions. In India, for example, the sickle cell gene variant is more common in some geographic and ethnic groups than others, with high rates reported among some tribal communities.
SCD can also occur in people who don’t identify with the groups most commonly associated with the disease, including people with mixed ancestry and some Hispanic American populations.
Sometimes, ancestry isn’t that clear. You may have family roots in several regions, or you may not know your full family history. In that case, race or appearance can’t tell you whether you have SCD or SCT. Testing is the only way to know your sickle cell status.
Why Is Sickle Cell Disease More Common in Certain Ancestries? Sickle cell gene variants became more common in regions where malaria was widespread. Carrying one copy of a sickle cell gene variant (SCT) offered some protection against severe malaria.
In areas where malaria was common, research shows that people with SCT were less likely to develop severe malaria than people without the trait. However, people with SCD can still get malaria, and an infection can cause serious complications.
That protection helped ensure that the sickle cell gene variant remained common in these populations over many generations. When two people who carry the variant have a child, the child can inherit a copy from each biological parent, which can result in SCD.
This doesn’t mean malaria causes SCD. Instead, malaria helps explain why sickle cell gene variants became more common in certain populations. The variants a person inherits determine whether they have SCD, SCT, or neither.
Yes. White people can get sickle cell disease. Although SCD is less common among people of European ancestry, being white doesn’t rule it out.
One study of Michigan births from 1997 to 2014 found that about 2.5 percent of newborns with sickle cell anemia, a type of SCD, were recorded as white. However, there isn’t enough data to say exactly how common SCD is among white people in the United States.
A person who identifies as white may have ancestry from a region where sickle cell gene variants are more common. They may also have mixed ancestry or family roots they don’t know about, especially across several generations.
That’s why race or appearance can’t tell you whether someone has SCD or SCT. If you’re white and wondering about your sickle cell status, talk to your healthcare provider about testing.
If you’re worried about passing SCD on to your child, sickle cell testing can help you know your own status.
To confirm your status, a healthcare provider can order a blood test called hemoglobin electrophoresis to check for SCT or SCD. Most people with SCT have no symptoms, so you can’t always tell from how you feel.
A sickle cell solubility screen can detect sickle hemoglobin in your blood, but it cannot tell whether you have SCD or SCT.
If you have a partner, their results are important too, since knowing both biological parents’ status can show what a child might inherit. A genetic counselor can help you understand the results and answer questions about having children.
The next steps can differ depending on those results. For some couples, testing can offer reassurance that their child isn’t expected to inherit SCD, although the child may still inherit SCT. If the results show a chance of passing on SCD, there are several options to consider when having a child.
Options may include in vitro fertilization (IVF) with genetic testing of embryos, using donor eggs or sperm, or adoption. Genetic counseling can give you time to understand these options before pregnancy.
If you’re already pregnant, prenatal testing can check whether your baby has SCD, SCT, or neither. Your healthcare provider can order tests to check the placental tissue or the fluid around your baby.
If you opt against prenatal testing, newborn screening can identify SCD shortly after birth. In the United States, newborns are routinely screened for SCD as a standard part of newborn care, so it can be identified even when parents don’t know their status.
Regardless of your sickle cell status, knowing your results gives you information to work with. Knowledge about your status is helpful whether you’re planning for a child now, might have a family later, or just want to understand your own genes.
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