Individual Data Sharing Consent
23andMe’s mission is to help people access, understand and benefit from the human genome. One of the ways we do this is through our research program. You have previously agreed to participate in our research. We are now asking for an additional level of research participation and consent. We seek your permission to share your de-identified individual-level Genetic & Self-Reported Information with research collaborators outside of 23andMe. We collaborate with researchers outside 23andMe when we believe they can help us accelerate research and drive scientific discoveries. We work with them to study many different topics including genetic factors behind diseases and traits, connections among diseases and traits, human migration and population history, and how people react to their personal genetic information.
This consent document serves as a supplement to our full consent document. You can review the 23andMe Main Research Consent here.
What am I agreeing to if I consent?
Giving consent by checking the appropriate box below means that you agree to let 23andMe share your de-identified individual-level data with approved researchers outside of 23andMe. That is, you agree that we may share your Individual-level Genetic & Self-Reported Information. This includes:
- Your genetic data
- Information you enter into surveys, forms and other features with the 23andMe Research logo or
- Data you separately authorize us to import for research
- Your age and ethnicity
What does “de-identified” mean?
De-identified means that we strip the data of information that could directly identify you (such as name, date of birth, and address) and connect any study information you provide by using a random code (for example a study ID). Any Genetic & Self-Reported Information you allow us to share will be associated with that code, not with your name.
What does “individual-level” mean?
Individual-level means the data are related to a single person. This is different from the 23andMe Main Research Consent you signed which allows us to share only information that has been combined or “pooled” with data from other research participants.
Allowing researchers to have access to individual-level data allows them to analyze the data more thoroughly, which may help them make more meaningful scientific discoveries.
Who are the research collaborators?
Research partners range from academic institutions and non-profit organizations to pharmaceutical and diagnostic companies. These research partners employ scientists who study many different health topics. Each partnership undergoes a rigorous screening process by a 23andMe scientific committee to ensure the goals and methods of the research are aligned with 23andMe’s mission and consistent with any of our associated research consent documents.
What can the research collaborators do with my data?
Our research partners must sign an agreement which describes what they can and can’t do with your data (for example, who can have access and what specific projects the data can be used for). We require strict data security measures which must be in place before we will release any data to them. The agreement also prohibits research collaborators from trying to identify you in any way or sharing your data outside the approved project.
We will not share your Genetic & Self-Reported Information for marketing purposes with our collaborators. You can learn more about how we share information for marketing purposes in our Privacy Statement.
Can I find out who my data is shared with?
For the most part, we won’t be able to contact you every time we would like to share your data. We may ask you to volunteer to provide information or take a survey on a specific topic or for a specific collaboration. In that case we will provide you with that information. Collaborations may result in scientific publications, which will be updated on a participant’s “publications dashboard” (this is a feature available under the “research” section of your account). If your data are used in a publication, it will only be published in summary form (combined data from many individuals), or using very limited, non-identifying information (such comments or feedback participants may consent to release).
How are my data protected?
23andMe takes seriously the trust you place in us. We have very strong security measures in place to ensure your data are transferred safely. 23andMe will also have agreements with all collaborators regarding the security and storage of data that we share. Although 23andMe cannot provide a 100% guarantee that your data will be safe, 23andMe policies and procedures minimize the chance that a breach could take place.
What are the additional benefits?
In addition to the benefits described in the 23andMe Main Research Consent, sharing your individual-level data will allow more researchers to study and analyze the data more thoroughly. This may increase the chance that meaningful scientific discoveries are made such as greater understanding of human disease and biology, human populations, and possibly new ways to diagnose or treat diseases. Sometime in the future you, your family or friends may benefit directly or indirectly from the research discoveries made by 23andMe or our research partners.
Based on the information you provide and allow us to share, 23andMe or our research collaborators may make new discoveries. In the future, those discoveries could lead to new commercial products or services (for example, new drugs, devices, or screening tests). If this happens, these products or services will be the property of the researchers who developed them and you will not receive any compensation.
What are the additional risks?
In addition to the risks described in the 23andMe Main Research Consent, sharing your individual-level data means your data would be stored in more locations. This would increase the risk of a security breach that could lead to the leak of your data. In the event of such a breach, if some or part of your genetic or self-reported data is associated with your identity in a public database, someone could match your name with your genetic or self-reported data. This could impact you directly. For example, these data may be made public or released to insurance companies, which could have a negative effect on your ability to obtain insurance coverage.
If 23andMe shares your genetic or self-reported data with a research collaborator, this action cannot be undone and your data will not be returned to 23andMe.
Do I have any alternatives? Can I change my mind?
Your alternative is not to agree to share your individual data. You can still participate in our research program without sharing your individual-level data.
Choosing not to give consent or withdrawing your consent will not affect your access to your Genetic Information or to the Personal Genetic Service.
You can withdraw your consent to share individual-level data at any time by declining this consent through your account settings. If you want to withdraw from our entire research program, you can decline the 23andMe Main Research Consent through your account settings as well. 23andMe will prevent your data from being shared after 30 days from receipt of your request (it may take up to 30 days to withdraw your information after you withdraw consent). If you withdraw your consent, any data that has been shared prior to this date cannot be reversed or undone.
Who do I contact if I have questions?
If you have general questions and need help with 23andMe's service, please go to the following web page:
- 23andMe Customer Care
If you suffer a research-related injuries, or if you have a question about subjects’ rights, please contact the following:
- 23andMe Human Protections Administrator
- Email: firstname.lastname@example.org
If you have any questions or concerns about research that you do not wish to discuss with 23andMe, click here to contact the independent, impartial research review board.
- Salus IRB (formerly Ethical & Independent Review Services)
- Email: email@example.com
- Reference study #: 10044