Apr 12, 2023 - Research

Teaming Up to Raise Awareness About Sickle Cell

23andMe has joined forces with Morehouse School of Medicine and the Sickle Cell Foundation of Georgia to launch a sickle cell carrier status awareness program.

It aims to improve access to sickle cell carrier status information and offer people clearer understanding of the differences between having sickle cell trait — being a carrier of sickle cell disease — versus having sickle cell disease. 

The Sickle Cell Carrier Status Awareness Program

As part of the program, 23andMe will offer its Health + Ancestry DNA testing kits at no cost to students, faculty, and staff at Morehouse School of Medicine. In addition to gaining information about their ancestry and health, participants will also gain access to the Sickle Cell Anemia Carrier Status report.* This service provides participants with information about their ancestry, health and more.  Participants will also be able to learn whether they are a carrier for sickle cell anemia. The report has information about what it means to be a carrier of the sickle cell anemia (also known as having sickle cell trait), and other resources. In addition, the program will also offer participants the opportunity to use counseling services from the Sickle Cell Foundation of Georgia.

“Our goal at 23andMe is to empower people through access to their genetic data, enabling consumers to make better, more informed decisions about their health,” said Joyce Tung, Vice President, Research at 23andMe.

23andMe is also working on sickle cell research, most recently in collaboration with scientists at the National Institutes of Health and Johns Hopkins University School of Medicine. The team also recently presented preliminary data from our work on what is now the largest and most diverse genetic study of sickle cell trait ever done.

“In addition to educating more people on certain genetic health risks, we believe this collaboration can contribute to more equitable research in, and product development for, groups of non-European ancestry,” Joyce said.

More about Sickle Cell Trait and Sickle Cell Disease

But a lot of work is needed to raise awareness more broadly about these conditions.

About one in 13 African Americans have the sickle cell trait, meaning that they have one copy of the HbS variant in the HBB gene. In other words, they are carriers of the sickle cell anemia and can pass that variant on to their children. Yet despite the prevalence of the sickle cell trait, many people, even carriers, do not fully understand what it means or how sickle cell disease is inherited.

The most commonly known form of sickle cell disease is sickle cell anemia. To have sickle cell anemia, a person must inherit two copies of the HbS variant — one from each biological parent. People with just one copy of the HbS variant are called carriers; they’re also said to have sickle cell trait. They’re not expected to have sickle cell anemia themselves, and they typically do not experience any health complications. However, they could pass their variant on to their future children. If their partner has the HbS variant, there’s a 25 percent chance that each child may have sickle cell anemia.  

But there are other forms of sickle cell disease that are caused by other variants in the HBB gene. Instead of having two copies of the HbS variant like people with sickle cell anemia, people with other types of sickle cell disease have one copy of the HbS variant and one copy of another variant in the HBB gene. Examples of other types of sickle cell disease include hemoglobin SC disease and sickle beta thalassemia disease.

23andMe’s Sickle Cell Anemia Carrier Status Report

23andMe’s Sickle Cell Anemia Carrier Status Report looks at the HbS variant in the HBB gene.

The report can also tell individuals if they have two copies of the tested variant, and if they are at risk of developing symptoms of sickle cell anemia, but the report does not describe one’s overall risk of developing symptoms. It is most relevant for people of African descent, people of Middle Eastern and South Asian descent, as well as people from the Caribbean, the Mediterranean, and parts of Central and South America.

23andMe’s Sickle Cell Anemia Carrier Status report tests for the HbS variant linked to sickle cell anemia, the most severe form of sickle cell disease. Three-hundred-million people worldwide and one in thirteen Black or African Americans in the United States have sickle cell trait, making them carriers for sickle cell anemia. 

*The 23andMe PGS test uses qualitative genotyping to detect select clinically relevant variants in the genomic DNA of adults for the purpose of reporting carrier status and reporting and interpreting genetic health risks. The relevance of each report may vary based on ethnicity. Our carrier status reports can be used to determine carrier status, but cannot determine if you have two copies of any genetic variant. These carrier reports are not intended to tell you anything about your risk for developing a disease in the future or anything about the health of your fetus, or your newborn child’s risk of developing a particular disease later in life. For certain conditions, we provide a single report that includes information on both carrier status and genetic health risk. For important information and limitations regarding other genetic health risk reports and carrier status reports, click here.

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