23andMe enables our customers to contribute to scientific research aimed at making and supporting meaningful scientific discoveries. Research topics range from discovering genetic factors behind diseases and traits to learning about human migration and population history through genetics.
When you register your 23andMe kit, you have several options when it comes to whether and how you want to participate in Research. Your participation in 23andMe Research is completely voluntary, so you may choose to not participate. If you change your mind about participating, you can review or change your consent choice in your Account Settings at any time. Choosing not to give consent or withdrawing from 23andMe Research will not affect your access to your genetic information or to the 23andMe Personal Genome Service.
If you choose to opt out of 23andMe Research, any of your data that have already been entered into a study cannot be withdrawn, but your data will not be included in studies that start more than 30 days after you opt out.
23andMe re-consents profiles who originally participated in 23andMe Research as minors and whose Legally Authorized Representative made consent choices on their behalf. When a minor becomes an adult, they will be presented with 23andMe Research Consent Documents upon login and will be asked to provide updated consent choices. Please contact Customer Care if you require further assistance.
Eligible customers will see the below options for 23andMe Research participation:
Research Consent Document
If you choose to take part in 23andMe Research, you will be asked to take surveys or enter information about yourself into the 23andMe website or mobile app. You choose what information to share, which surveys to take, and which questions to answer. By choosing to give consent to the Research Consent Document, you agree to allow 23andMe researchers to use certain information (including your Genetic Information and your responses to research surveys) to study a wide variety of research topics. To protect your privacy, 23andMe conducts research with de-identified information that has been stripped of information that could directly identify you (name, date of birth, address) and connect any study information you provide by using a code in place of your direct identifiers that does not reveal who you are (for example a study ID or a secure matching token). Any Research Information you allow us to share will be associated with that code, not with your name.
Your Research Information (information we may use for 23andMe Research) includes:
- Your Genetic Information
- Your Self-Reported Information
- Your age and ethnicity
- Information you enter into the website or mobile app that is labeled with the 23andMe Research logo
- Data from a third party that you connect or provide to 23andMe
- Data from external sources that are stripped of your name and contact information. For example, data from previous research studies you approved for future use, medical data, or publicly available records
- How you interact with the 23andMe platform — for example, what genetic reports you view or which research surveys you take
- Your microbiome data: Information about the bacteria, viruses, and other microbes that are present in the biological sample you provided
Some 23andMe Research is conducted in collaboration with third parties, such as non-profit organizations, pharmaceutical companies, or academic institutions. We may share summaries of research results, which do not identify any particular individual, with qualified research collaborators and in scientific publications.
We may also ask you for your explicit consent to share your individual-level information with approved third-party researchers. 23andMe will never release your individual-level data to any third party without asking for and receiving your explicit consent via the Individual Level Data Sharing Consent described below. For more details about research consent and privacy, you can review the complete consent document here.
Individual Data Sharing Consent Document
Customers also have the option to authorize 23andMe to share their de-identified, individual-level Research Information with qualified research collaborators by consenting to our Individual Data Sharing Consent Document. This is an additional consent that is offered if you have already chosen to participate in 23andMe Research. If you decline or later withdraw from Individual Data Sharing, we will not share your de-identified individual-level information with research collaborators, but you may still participate in 23andMe Research. It’s important to remember that 23andMe researchers and qualified research partners who conduct analyses do NOT have access to registration information, such as your name or contact information.
For more details about this type of research consent and privacy, please review the Individual Data Sharing Consent Document.
Research Opportunities Based on Your Unreported Genetics
If you agree to learn about research opportunities based on your unreported genetics, it means that we may contact you in the future about research opportunities based on genetic information that is not included in your 23andMe reports.
This is different than our other research consents (the Research Consent Document and the Individual Data Sharing Consent Document) because you are not agreeing to participate in a specific research study. Rather, you are agreeing to be contacted about research opportunities in the future.
If you agree, you may receive invitations for research opportunities based on genetic information that is not included in your 23andMe reports. These invitations will not disclose specific genetic variants you carry but may mention a condition being studied.
Every research opportunity is different. For instance, if you agree to participate in a particular study, you may or may not learn new information about your genetics, including whether or not you carry the variant(s) being studied. We will always share the details of a study, including whether or not you will be offered new genetic health information, before you agree to participate. If you opt out of Research Opportunities Based on Your Unreported Genetics, we will not contact you about such Research opportunities, but you may still participate in 23andMe Research.
For more details about this type of research participation and privacy, please review the Research Opportunities Based on Your Unreported Genetics help article.
Privacy and Security of 23andMe Research
Any information collected through 23andMe Research continues to be protected through a range of physical, technical, and administrative measures. These measures are in accordance with current technological and industry standards and are meant to prevent unauthorized access or disclosure of information, ensure the appropriate use of information, and overall maintain the privacy of Research participants.
To protect your privacy, 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). Your contact information may be used to communicate with you but are not analyzed in combination with your Research 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.
As always, your participation in 23andMe Research is completely voluntary. You can view or make updates to your consent choice at any time in your Account Settings. If you choose to opt out of 23andMe Research, any of your data that have already been entered into a study cannot be withdrawn, but your data will not be included in studies that start more than 30 days after you opt out.
If you have a research-related issue or questions about subjects' rights, please contact the Human Protections Administrator via hpa@23andme.com.
If you have questions about the surveys or how to access them, you can contact Customer Care.