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If you choose to opt out of 23andMe Research, any of your data that have already been entered into a study cannot be withdrawn, but your data will not be included in studies that start more than 30 days after you opt out.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 the Customer Care Team (email@example.com) 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 your name and contact information [and is typically analyzed in combination with similar information from many other individuals].
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 authorize us to use for research
- 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 authorization to do so. For more details about research consent and privacy, you can review the complete consent document here.
2023 Research Consent Updates
What updates did you make to the Research Consent Document?
With our most recent consent updates, we have added these two types of data for use in 23andMe Research:
- Microbiome data: The human body plays host to trillions of microbes, collectively called the microbiome. Over the past few decades, it has become abundantly clear to the scientific community that the microbiome can play an essential role in our development, physical health, and mental well-being. The saliva sample you provided to 23andMe contains information about the bacteria, viruses, and other microbes that inhabit the human body. Studying associations between the microbiome, human genetics, and self-reported information could hopefully lead to greater insights into human health.
- Data about how you interact with the 23andMe platform: Research analyses about how customers interact with the 23andMe platform — such as health reports they view, product features they use, and Research surveys they take — allow us to address new Research questions. Some analyses might give insight into the research process. For example, are certain genetic or other factors associated with particular patterns of research participation? Other analyses might address outcomes of viewing online health reports. For example, for participants at increased risk of diabetes, does viewing the diabetes report correlate with self-reported changes in diet or exercise?
These Research Consent Document updates expand what data types 23andMe researchers can use in their Research. These updates do not change the privacy protections we have put in place, or how we use participants' data in Research.
Your participation in the 23andMe Research study is completely voluntary, so you may choose to not participate. If you change your mind about participating, you can change your consent choice in your Account Settings at any time.
Why did 23andMe make updates to the Research Consent Document?
We made updates to our Research Consent Document to expand the data types that can be used in 23andMe Research. We are excited that our researchers can now explore associations with two new types of data: our participants’ interactions with the 23andMe platform and the microbiome. By expanding the data types we can analyze, we hope to power greater insights into human health and wellness.
These updates only expand what data our researchers are able to use in their Research, but do not change the way we conduct research. By analyzing the microbiome, 23andMe researchers can study how different microbial markers — that is, different characteristics of the microbiome — relate to human genetics, traits, health, and wellness. Research that uses microbiome data may lead to new ways to improve wellness and treat disease.
Research analyses about how customers interact with the 23andMe platform — such as health reports they view, product features they use, and Research surveys they take — allows us to address new Research questions. Some analyses might give insight into the research process. For example, are certain genetic or other factors associated with particular patterns of research participation? Other analyses might address outcomes of viewing online health reports. For example, for participants at increased risk of diabetes, does viewing the diabetes report correlate with self-reported changes in diet or exercise?
Does this change affect the privacy and security of the information I have shared with 23andMe?
The privacy and security of your information have not changed as a result of these updates. 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 further protect your privacy, 23andMe conducts Research with information that has been stripped of your name and contact information and combined with similar information from many Research participants.
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.
Do I need to update my consent choice after these updates?
You do not need to take any action at this time. The purpose of these updates is to expand the new data types we use in 23andMe Research, which could improve our ability to make new and meaningful discoveries.
Furthermore, if you have previously consented to our Individual Data Sharing Consent, we may share your individual-level microbiome data and/or data about how you interact with the 23andMe platform with qualified research collaborators (just as we may share your individual-level Genetic and Self-Reported Information, if you've agreed to the Individual Data Sharing Consent). You can review and update your consent choices in your Account Settings at any time.
Individual Data Sharing Consent Document
Customers also have the option to authorize 23andMe to share their de-identified, individual-level data 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 opt out of Individual Data Sharing, we will not share your individual-level information with research collaborators, but you may still participate in 23andMe Research.
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.