Do you know whether you’re a carrier for sickle cell disease? We can help.
Learn about our Sickle Cell Carrier Status Awareness Program
The Sickle Cell Carrier Status
23andMe is collaborating with various academic and advocacy organizations to help people learn their sickle cell carrier status, promote sickle cell disease (SCD) awareness, and offer resources to those with sickle cell trait (SCT) and SCD. Additionally, the program offers an opportunity for individuals to learn more about their ancestral heritage and access 65+ Health reports and features, including reports on several conditions that disproportionately affect the Black and/or African American community. Through this work, 23andMe hopes to raise awareness about important health conditions that touch many individuals but disproportionately impact the Black and African American communities to help ensure that its products, services, and research benefit all people equitably. Click here to learn if you are eligible to participate.
Some of our collaborators are listed below:
I see this as an opportunity to remove a barrier to screening. Typically, young adults don’t get tested. It’s best to have the information before family planning so you aren’t blindsided and have options.Dr. Lametra Scott
What is sickle cell trait?
300 million people worldwide and 1 in 13 Black or African Americans have sickle cell trait (SCT). This means they are carriers for sickle cell anemia, one of the most common hemoglobin disorders in the world.
People with SCT carry one copy of the HbS variant in the HBB gene. The HbS genetic variant can cause red blood cells to have a "sickle" (or crescent) shape, but people with SCT typically do not experience any symptoms, unless under extreme conditions. This is because they usually have enough normal hemoglobin in their red blood cells to compensate. However, their children could be at risk of inheriting sickle cell anemia or another type of sickle cell disease (SCD) if their partner is also a carrier for a variant in the HBB gene. See below to learn more about Sickle Cell Disease.
Because it provides protection against severe malaria, SCT is most common in global regions where malaria is also common, including West/Central Africa, Mediterranean Europe, India, and the Middle East. In the U.S. and other parts of the Americas, SCT is most common in people with ancestry from West and Central Africa.
To learn more about Sickle Cell Trait, visit:
- Centers for Disease Control and Prevention
- Breaking the SSickle Cell Cycle
- American Society of Hematology
What is sickle cell disease?
Sickle cell disease (SCD) is a group of inherited blood disorders that impacts the shape and production of red blood cells. Sickle cell disease impacts the red blood cells’ hemoglobin, a protein that helps carry oxygen. In particular, if both parents have sickle cell trait, the children are at risk of inheriting the form of SCD known as sickle cell anemia (SCA or hemoglobin SS).
SCD affects more than 100,000 people in the U.S., including 1 in 365 Black or African Americans. Similar to SCT, SCD disproportionately affects the B/AA community in the U.S.
To learn more about Sickle Cell Disease, visit:
- Centers for Disease Control and Prevention
- National Heart, Lung, and Blood Institute
- Sickle Cell Foundation of Georgia
How it works
The steps to participate in the Sickle Cell Carrier Status Awareness Program take roughly 15 minutes - all from home. Participation is completely voluntary.
Eligible individuals can claim a 23andMe Health + Ancestry kit at no cost. Once you receive your kit, follow the kit instructions to spit in the tube provided. Register your saliva collection tube using the barcode so we know it belongs to you, and mail it back to our lab in the prepaid package. In a few weeks, we will send you an email to let you know your reports are ready in your secure online account. Log in to your account and you will have the option to opt-in to your health reports to view your Sickle Cell Anemia Carrier Status Report*, along with additional carrier status, health predisposition*Learn about Considerations and Limitations for Health Predispositions Reports, Carrier Status Reports and Genetic Health Risks (which includes genetic health risk reports and reports powered by 23andMe Research), wellness, ancestry and trait reports, and start discovering what your DNA says about you.
Note: Participation in the Sickle Cell Carrier Status Awareness Program is limited to U.S. based individuals only.
It takes collaboration
“The collaboration between MSM, 23andMe, and the SCFG offers the potential for impact at scale,” said Herman Taylor, Endowed Professor and Director of the Cardiovascular Research Institute (CVRI) at Morehouse School of Medicine. “Working together, we have the opportunity to share scientific and health insights for diseases that impact those in the Black and African American community at higher rates, allowing individuals to address health risks early and prevent disease.”
Morehouse School of Medicine and 23andMe launched the collaboration to further awareness about sickle cell trait through the Sickle Cell Carrier Status Awareness program on April 11th, 2023. In the first such collaboration between a genetic testing company and a Historically Black Medical College (HBMC), 23andMe is offering its Health + Ancestry DNA testing kits at no cost to MSM students, faculty and staff, including a Carrier Status report on sickle cell anemia.* Program participants were also offered counseling by the Sickle Cell Foundation of Georgia after receiving their 23andMe results. This program is one of many ways in which 23andMe and MSM are working together to increase equity in genetics and genomics.
I’m excited about this partnership to not only increase awareness about sickle cell trait and sickle cell disease, but to improve community engagement and trust which helps improve research participation in our local community.Dr. Jason Payne
Although participation in Research is not required for participation in the Sickle Cell Carrier Status Awareness Program, 23andMe customers have the opportunity to contribute to groundbreaking research — including conditions that disproportionately affect the Black/African American community — at a scale that's unique in the field. Participation in 23andMe Research is completely voluntary.
I’m so excited about this program because of its potential to extend the benefits of genetics and provide participants, including future healthcare providers, with actionable information on sickle cell and on other important health conditionsDr. Anjali Shastri
Research on Sickle Cell Trait
A noteworthy example is 23andMe’s current study on sickle cell trait and blood clots, in collaboration with researchers at the National Human Genome Research Institute (NHGRI) and Johns Hopkins University. This study, for which preliminary results were shared at the American Society of Hematology conference in December 2022, found that sickle cell trait is a risk factor for venous thromboembolisms (or blood clots) and in particular, pulmonary embolism (a blood clot in an artery in the lungs). This was the largest study ever conducted on the topic, including 19,000 individuals with sickle cell trait, and it could help inform the clinical guidelines that doctors use to make sure their patients receive the right care.
Note: participation in Research is NOT required for participation in the Sickle Cell Carrier Status Awareness Program.
Frequently Asked Questions
Hi. Still have questions about 23andMe and/or the Sickle Cell Carrier Status Awareness Program? If you don’t see your question here, get in touch with us at: sct-awareness@23andMe.com.
Eligible participants must be 18 years of age or older and live in the United States.
As part of your participation in this program, you will receive a 23andMe Health + Ancestry Kit with saliva collection kit at no cost and the option to access the 23andMe Health + Ancestry Service. The 23andMe Service provides you with 150+ personalized genetic reports on your traits, wellness, carrier status, health predisposition reports (includes genetic health risk reports that meet Food and Drug Administration (FDA) requirements and reports that are Powered by 23andMe Research), and ancestry. The test does not diagnose any specific health conditions. Results should not be used to make medical decisions. Please contact a qualified medical provider if you have any questions or concerns about the results contained in your reports. For important information and limitations regarding each genetic health risk and carrier status report, visit Important test info
- Our rigorous standards ensure quality service. Our Carrier Status and Genetic Health Risk reports* reports meet FDA requirements for being scientifically and clinically valid
- All saliva samples are processed in labs that meet the industry's highest standard for laboratory tests
- The DNA collection kit is FDA-cleared for use with our Genetic Health Risk and Carrier Status reports
- The kit is manufactured in accordance with FDA's Good Manufacturing Practice regulations
- Genotyping is a well-established and reliable platform for analyzing DNA
- Our team of scientists and medical experts uses a robust process to develop reports to ensure validity
- Ancestry percentages are derived from our powerful, well-tested system that provides you with ancestry estimates down to the 0.1%
No. Research consent and Research participation are voluntary and are not required for participation in the Sickle Cell Carrier Status Awareness Program. However, should you choose to participate in 23andMe’s optional Research program, data will be used according to the 23andMe Main Research Consent Document.
You are in control. You choose how your Personal Information is used and shared. For additional information on the protection of your data, visit our privacy statement at https://www.23andme.com/legal/privacy/full-version/
- We will not use your Personal Information in Research without your separate consent.
- Nor will we share your individual-level data in Research without your explicit consent.
- A federal law (GINA) provides protection from employer and health insurance discrimination based on your genetics.
- We do not provide Personal Information to law enforcement unless we are required to comply with a valid subpoena or court order.
We have measures in place to prevent unauthorized access and ensure appropriate use of your Personal Information. For example:
- Separate databases store your Genetic Information decoupled from your Registration Information, which reduces the risk and impact of a breach.
- Exceed industry data protection standards and have achieved 3 different ISO certifications to demonstrate the strength of our security program.
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- 23andMe Terms of Service https://www.23andme.com/legal/terms-of-service/
- 23andMe Data Privacy www.23andme.com/privacy/
- 23andMe Transparency Report www.23andme.com/transparency-report/
- 23andMe Research https://www.23andme.com/research/
- GINA www.eeoc.gov/genetic-information-discrimination
- 23andMe Customer Care https://customercare.23andme.com/
*The 23andMe Personal Genetic Service test includes health predisposition and carrier status reports. 23andMe health predisposition reports include both reports that meet FDA requirements for genetic health risks and reports which are based on 23andMe research and have not been reviewed by the FDA. The test uses qualitative genotyping to detect select clinically relevant variants in the genomic DNA of adults from saliva for the purpose of reporting and interpreting genetic health risks. It is not intended to diagnose any disease. Your ethnicity may affect the relevance of each report and how your genetic health risk results are interpreted. Each genetic health risk report describes if a person has variants associated with a higher risk of developing a disease, but does not describe a person’s overall risk of developing the disease. The test is not intended to tell you anything about your current state of health, or to be used to make medical decisions, including whether or not you should take a medication, how much of a medication you should take, or determine any treatment. 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, 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 each genetic health risk and carrier status report, visit 23andme.com/test-info/