Know your Sickle Cell carrier status. Take charge of your health.

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The Sickle Cell Carrier Status
Awareness Program

23andMe is collaborating with various academic and advocacy organizations, including Sickle Cell 101, to help people learn their sickle cell carrier, or trait, status; promote sickle cell disease (SCD) awareness; and offer educational resources to those with sickle cell trait (SCT) and SCD. You can learn if you are a carrier for SCD by participating in this program.*Learn about Considerations and Limitations for Health Predispositions Reports, Carrier Status Reports and Genetic Health Risks Current and past collaborators are listed below.

Our goal

23andMe is committed to improving awareness about sickle cell trait (SCT) and disease (SCD), as well as other important health conditions that affect many individuals but disproportionately impact the Black and African American communities. This is part of 23andMe’s mission to ensure that our products, services, and research benefit all people equitably. You can learn more about our program as well as about SCT and SCD here.

Your participation is important

Sickle cell disease (SCD) is a group of inherited blood disorders that impacts the shape and production of red blood cells. In the U.S., SCD affects one in 365 Black or African Americans. Worldwide, 300 million people and 1 in 13 African Americans have sickle cell trait (SCT), which means they are carriers for sickle cell anemia (a form of SCD). Learn important information about your sickle cell anemia carrier status*Learn about Considerations and Limitations for Health Predispositions Reports, Carrier Status Reports and Genetic Health Risks and what that may mean for your own health and the health of any future children by participating today.

Additionally, the program offers an opportunity for you to access other carrier status reports, along with additional health*Learn about Considerations and Limitations for Health Predispositions Reports, Carrier Status Reports and Genetic Health Risks , wellness, ancestry and trait reports. Some examples include important conditions such as: APOL1-related chronic kidney disease, G6PD deficiency, and TTR-related hereditary amyloidosis.

Source: CDC

Why it matters

Knowing your sickle cell carrier status means:

  • You can make an informed decision about family planning
    • If two parents both have SCT, there is a 25% chance that each of their children will have sickle cell anemia (a form of SCD) and a 50% chance that each of their children will have SCT.
    • If only one parent has SCT and the other is not a carrier for sickle cell anemia or any other hemoglobin disorder, there is a 50% chance that a child will also have SCT.
  • If you have SCT, you can be proactive about potential complications
    • Although SCT usually does not cause any symptoms, in rare cases people with SCT may experience some health impacts. You can learn more from the CDC and the American Society of Hematology. You can also speak to your healthcare provider or experts at Sickle Cell 101 through contacting: ask@sc101.org.

How it works

The steps to participate in the Sickle Cell Carrier Status Awareness Program are simple and take roughly 15 minutes - all from home. Participation is completely voluntary.

  1. Confirm eligibility below
  2. Begin enrollment by clicking “Participate now” below
  3. Complete the optional consent form
  4. Receive a 23andMe Health + Ancestry kit at no cost
Participate now

Once you receive your kit, spit in the tube provided and mail it back 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. To view your Sickle Cell Anemia Carrier Status Report*Learn about Considerations and Limitations for Health Predispositions Reports, Carrier Status Reports and Genetic Health Risks , log in and opt-in to your health reports. If you would like to speak with an expert about your Sickle Cell Anemia Carrier Status report, there are resources available to you through Sickle Cell 101.

Note: Participation in the Sickle Cell Carrier Status Awareness Program is limited to U.S. based individuals only.

Eligibility

  1. You live in the United States
  2. You are at least 18 years old
  3. You have African ancestry; identify as Black, African American, or of African descent; or you have ancestry from a region where sickle cell disease is common**Common Sickle Cell regions
  4. You are willing to provide a saliva sample for DNA testing
  5. You are willing to agree to 23andMe’s Terms of Service and Privacy Statement
  6. Research consent is optional and not required for participation in the program

Please note that you are not required to consent to 23andMe Research or to store your saliva sample in order to participate in the Sickle Cell Carrier Status Awareness Program

Existing 23andMe customers can access their Sickle Cell Carrier Status report here. Already a research participant? Start our Health Profile survey to contribute to research.

Privacy

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. Some highlights:

  1. A federal law (GINA) provides protection from employer and health insurance discrimination based on your genetics.
  2. We will not share your genetic data with employers, insurance companies, public databases or 3rd party marketers without your explicit consent.
  3. We will not release any individual-level personal information to law enforcement unless we are required to do so by court order, subpoena, search warrant or other requests that we determine are legally valid. To date we have not shared any customer genetic data with law enforcement.***Date of last Transparency Report update See our Transparency Report for additional information.
  4. 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.

FAQs

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. Additionally, they must have African ancestry; identify as Black, African American, or of African descent; or have ancestry from a region where sickle cell disease is common.

Existing 23andMe customers can access their Sickle Cell Carrier Status report here. Already a research participant? Start our Health Profile survey to contribute to research.

Yes. As a program participant you will have access to counseling from providers at Sickle Cell 101 as well as the 23andMe Health + Ancestry Service at no cost. The 23andMe Health + Ancestry Kit 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

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%

Learn more about sickle cell trait and disease through educational material from these trusted sources:

Sickle Cell Disease:

  1. Sickle Cell 101
  2. Sickle Cell Foundation of Georgia
  3. MedlinePlus
  4. GeneReviews
  5. Centers for Disease Control and Prevention
  6. National Heart, Lung, and Blood Institute

Sickle Cell Trait:

  1. Breaking the SSickle Cell Cycle
  2. Centers for Disease Control and Prevention
  3. American Society of Hematology

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.
  • External firewalls restrict unauthorized connections to our databases.
  • All connections to our website are encrypted using SSL (Secure Sockets Layer) technology.

*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. The Sickle Cell Anemia carrier status report is indicated for the detection of the HbS variant in the HBB gene. The report can tell you if you have two copies of the tested variant, and if you are at risk of developing symptoms of sickle cell anemia, but does not describe your overall risk of developing symptoms. This test is most relevant for people of African descent. It is also relevant for people of Middle Eastern and South Asian descent, as well as people from the Caribbean, the Mediterranean, and parts of Central and South America. For important information and limitations regarding each genetic health risk and carrier status report, visit 23andme.com/test-info/

**Regions include Africa, the Middle East, South Asia, the Caribbean, Mediterranean Europe/Asia, Central and South America.

***As of September 24, 2024