Genetic insights into colorectal cancer in the Black community

Help advance colorectal cancer research by participating in our study.

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Why is 23andMe conducting this study?

23andMe is collaborating with the Colorectal Cancer Alliance to help advance colorectal cancer research. The Genetic Insights into Colorectal Cancer in the Black Community study is part of 23andMe’s continued efforts to raise awareness about important health conditions that touch many individuals but disproportionately impact the Black and African American communities. One of these conditions is colorectal cancer, which includes colon cancer and cancer of the rectum.

Source

Your participation is important

In the U.S., Black and African Americans tend to experience earlier onset and worse disease outcomes for colorectal cancer.

Did you know? Black and African Americans are 15% more likely to develop colorectal cancer and 35% more likely to die from it than non-Hispanic white Americans.

With your help, we hope to develop and provide a genetic report that could help people in the Black/African American community learn more about their chances of developing this important condition. If you or someone you know has ever been diagnosed with colorectal cancer, you can contribute to these efforts. Eligible participants will receive compensation for their time and effort in helping us with this research.

At 23andMe we are committed to providing you with a safe place where you can learn about your DNA and contribute to research while knowing your privacy is protected. Learn more about our commitment to your confidentiality.

Source: CCA

Am I eligible to participate?

You can participate in this study if:

  • You are 18 years of age or older
  • You live within the United States
  • You have ever been diagnosed with colorectal cancer, which includes colon cancer and cancer of the rectum
  • You have African ancestry or identify as Black, African American, or of African descent
  • You are willing to provide a saliva sample for DNA testing (new customers only)
  • You are willing to consent to the 23andMe Research Consent Document
Participate now

How do I participate?

Participation in the study is simple and can be done entirely from home.

  1. Confirm eligibility (To participate in this study, you need to meet the eligibility requirements.)
  2. Begin enrollment by clicking “Participate now” below
  3. Complete consent to participate in 23andMe Research (This is the only consent required to participate in this study. All other consents are optional.)
  4. Receive a 23andMe Health plus Ancestry kit at no cost (applicable for new customers only)
  5. Register your 23andMe kit and provide a saliva sample (if applicable)
  6. Answer survey questions about your experience with colorectal cancer
Participate now

Eligible participants will receive your choice of either a one-year 23andMeplus Premium membership at no cost (Regular Price ) or a Visa® gift card>About Visa after completing these study steps.

Your results, your choice

23andMe believes knowledge is power and that individuals should have the option to access information about their genetics. As a participant in the Genetic Insights into Colorectal Cancer in the Black Community study, you can access 65+ Health reports and features, including reports on several conditions that disproportionately affect the Black and African American community, if you want to. Some people prefer not to learn about their genetic risks for certain conditions. You will have the option to choose whether or not to access these reports — and you can change your settings at any time. You can find condition-specific resources within each report.

Learn more about the 23andMe Health plus Ancestry Service and important test information here.

Know the benefits, understand the risks

There are both potential benefits and risks to be aware of should you choose to participate in the Genetic Insights into Colorectal Cancer in the Black Community study.

Potential benefits of participation:

Potential risks of participation:

  • If you choose to receive health reports, you may learn you have a genetic risk factor for a condition, which could introduce anxiety or an emotional reaction.
  • You could learn unexpected information about your health or ancestry. See this article for more information.
  • Although the Genetic Information Nondiscrimination Act prohibits discrimination based on genetics for employment and health insurance, this protection does not extend to genetic information-based discrimination in life, long-term care or disability insurance. See this article for more information.

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 share your individual-level data without your explicit consent.

Frequently asked questions

Still have questions about 23andMe and/or the Genetic Insights into Colorectal Cancer in the Black Community study? If you don’t see your question here, get in touch with us at crc-study@23andme.com

Yes. The Genetic Insights into Colorectal Cancer in the Black Community study is part of 23andMe Research and therefore requires research consent to the 23andMe Research Consent Document for participation if you choose to participate. During the enrollment process, you may also see additional consents available to you. These remaining research-related consents in the enrollment process are optional and not required for participation in the study. You can withdraw from 23andMe Research at any time by changing your consent status in your account settings.

The 23andMeplus Premium membership provides access to everything in our Health plus Ancestry Service, plus enhanced ancestry features, access to additional premium reports that can help you learn more about your heart health, how you process certain medications***Learn about Considerations and Limitations for Pharmacogenetics Reports, and more. Participation in the study may provide you access to a one-year 23andMeplus Premium membership at no cost. As a 23andMe customer, you may choose to access a one-year 23andMeplus Premium membership. Please note, if you are eligible for the study, a valid payment method will be required to activate your 23andMeplus Premium membership but will not be charged for the first year. The 23andMeplus Premium membership will automatically renew at /yr. Cancel anytime from within your account settings. Claiming your 23andMeplus Premium membership is optional for study participation. You may choose a Visa® gift card>About Visa as your form of study compensation instead of a 23andMeplus Premium membership.

For additional information on the protection of your data, visit our privacy statement.

  • 23andMe uses a range of physical, technical, and administrative procedures to protect the privacy of your Personal Information. 23andMe research analyses are conducted with information that has been stripped of your identifying Registration Information (information you provide when you register your account, such as your name and contact information).
  • When we publish research results or share results with collaborators, we only publish or share summary information that does not identify any particular individual.
  • Several laws at the federal and state levels help protect people against genetic discrimination. In particular, a federal law called the Genetic Information Nondiscrimination Act (GINA) is designed to protect people from this form of discrimination. This law makes it illegal for health insurance providers to use or require genetic information to make decisions about a person's insurance eligibility or coverage. It also makes it illegal for employers to use a person's genetic information when making decisions about hiring, promotion, and several other terms of employment. We will not voluntarily provide your data (genetic or non-genetic) to an insurance company or employer. GINA and other laws do not protect people from genetic discrimination in every circumstance.
  • We do not provide Personal Information to law enforcement unless we are required to comply with a valid subpoena or court order.

If you choose to participate in this study, 23andMe will use your data in accordance with our Privacy Statement, namely in two key ways: 1) to provide you Services as a customer of 23andMe and 2) for the Genetic Insights into Colorectal Cancer in the Black Community study and for research purposes as a 23andMe Research participant (outlined in the 23andMe Research Consent Document).

We use your data to operate, provide, analyze and improve our services. These activities may include, among other things, using your information to:

  • Open your account, enable purchases and process payments, communicate with you, and implement your requests (e.g., referrals).
  • Process and deliver your genetic testing results.
  • Offer new products or services to you, including through emails or promotions.
  • If you agree to the main 23andMe Research Consent Document, you agree to let 23andMe researchers use certain information in 23andMe Research. We may share summaries of research results, which do not identify any particular individual, with qualified research collaborators and in scientific publications. Typical summary results describe research findings such as associations of gene variants with disease risk.
  • We will not share your individual-level data without your explicit consent.
  • There is no cost to you for participating in this study.
  • Study participants will receive their choice of either a one-year 23andMeplus Premium membership at no cost (Regular Price ) or a Visa® gift card>About Visa as compensation for their time and effort. As a 23andMe customer, you may choose to access a one-year 23andMeplus Premium membership. Please note, a valid payment method will be required to activate your 23andMeplus Premium membership but will not be charged for the first year. The 23andMeplus Premium membership will automatically renew at /year. Cancel anytime from within your account settings. Claiming your 23andMeplus Premium membership is optional for study participation.
  • Sometimes inventions are made from what is learned in research. Those inventions have value if they are made or sold. Some profits may be paid to researchers or organizations doing research, but you will not receive any financial benefits.

If you withdraw from this study or are withdrawn by the Investigator, you will still be allowed full access to your Genetic Information and to the 23andMe Personal Genome Service.

If you withdraw your consent from the main Research Consent Document, 23andMe will prevent your Research Information from being used in new 23andMe Research initiated after 30 days from when we receive your request from your Account Settings page in your account. You have the right to change your mind and you may withdraw at any time by withdrawing from the main Research Consent.

The Colorectal Cancer Alliance empowers a nation of passionate and determined allies to prevent, treat, and overcome colorectal cancer in their lives and communities. Founded in 1999 and headquartered in Washington, D.C., the Alliance advocates for prevention, magnifies support, and accelerates research. The Alliance is the largest national nonprofit dedicated to colorectal cancer, and they exist to end this disease in our lifetime. For more information, visit www.colorectalcancer.org.

Screening is essential for prevention and early detection of colorectal cancer. Learn more about the importance of screening and available screening methods here.

For people with certain types of genetic risk or a family history of colorectal cancer, earlier and more frequent screening may be recommended. Learn more about some of the genetic risks of colorectal cancer here.

The Colorectal Cancer Alliance believes that no one should have to go through colorectal cancer alone. The Alliance provides support for patients, survivors, caregivers, family members, and other people impacted by colorectal cancer. Learn more about colorectal cancer resources and support here.

> Visa is a registered trademark of Visa, U.S.A. Inc.

*The 23andMe PGS 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/

**As of September 24, 2024, Date of last Transparency Report update

***23andMe PGS Pharmacogenetics reports: The 23andMe test uses qualitative genotyping to detect 3 variants in the CYP2C19 gene, 2 variants in the DPYD gene and 1 variant in the SLCO1B1 gene in the genomic DNA of adults from saliva for the purpose of reporting and interpreting information about the processing of certain therapeutics to inform discussions with a healthcare professional. It does not describe if a person will or will not respond to a particular therapeutic. Our CYP2C19 Pharmacogenetics report provides certain information about variants associated with metabolism of some therapeutics and provides interpretive drug information regarding the potential effect of citalopram and clopidogrel therapy. Our SLCO1B1 Pharmacogenetics report provides certain information about variants associated with the processing of some therapeutics and provides interpretive drug information regarding the potential effect of simvastatin therapy. Our DPYD Pharmacogenetics report does not describe the association between detected variants and any specific therapeutic. Results for DPYD and certain CYP2C19 results should be confirmed by an independent genetic test prescribed by your own healthcare provider before taking any medical action. Warning: Test information should not be used to start, stop, or change any course of treatment and does not test for all possible variants that may affect metabolism or protein function. The PGS test is not a substitute for visits to a healthcare professional. Making changes to your current regimen can lead to harmful side effects or reduced intended benefits of your medication, therefore consult with your healthcare professional before taking any medical action. For important information and limitations regarding Pharmacogenetic reports, visit 23andme.com/test-info/pharmacogenetics/