Research Consent Document
Part of 23andMe’s mission is to help people benefit from the human genome, and research is an important part of that mission. Here are some highlights of our Research Consent Document. Please read the entire consent document below before making your decision to participate.
- The purpose of 23andMe Research is to make new discoveries about genetics and other factors behind diseases and traits.
- If you agree to this consent, you 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 information that has been stripped of your name and contact information and combined with similar information from many research participants.
- 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.
- It is unlikely that you will directly benefit from your participation, though you and others may benefit in the future from discoveries that lead to healthcare advances or improvements to 23andMe’s product or services. There is a very small risk that someone could get access to your Personal Information (information that can be used to identify you) without your permission in the event of a privacy breach.
- Taking part in this research is completely voluntary, and you can change your consent choice at any time without affecting your access to the 23andMe product or services.
Purpose: Why is 23andMe doing research?
23andMe aims to make and support scientific discoveries about genetics and other factors behind diseases and traits. To do this, we conduct our own research and support the work of other researchers around the world by collaborating and publishing our findings in scientific journals. Results of our research may be used to help develop new ways to diagnose and treat disease, or new reports and features for the 23andMe product or services. We study:
- Genetic and other factors behind diseases and traits
- Ways to diagnose and treat diseases
- The history of peoples across the world, including how they migrated and intermixed in the past
- How people react to their genetics
Topics include simple traits such as hair color or freckles, serious diseases such as Parkinson’s disease or diabetes, and less serious conditions such as migraine headaches.
23andMe makes discoveries by analyzing information across large numbers of research participants to find patterns. These patterns might tell us, for instance, if people with a particular set of genetic factors are more likely to get a disease such as cancer or diabetes, or asthma. Another pattern might point to a new way to treat a disease. Results of our research may be used to help develop new drugs. Some discoveries made by 23andMe could help researchers better understand disease and may guide diagnosis and treatment decisions.
For example, in 2020 23andMe conducted a study of genetic factors that contribute to susceptibility to COVID-19. We found that the ABO blood groups lead to differences in severity of the disease.
Other discoveries help us understand the history of human migrations that led to our current world populations.
For example, in 2020 23andMe shared their findings about the genetic impact of the TransAtlantic Slave Trade on people in the Americas. We found that the genetic data corresponded closely with the historical records of people being forcibly transported from Africa, but there were notable exceptions of discrepancies that shed light on this important period in history.
What does it mean to take part in 23andMe Research?
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 which surveys to take, which information to provide, and which questions to answer. Giving consent means that you agree to let 23andMe researchers use your Genetic & Self-Reported Information (including such information provided prior to giving consent) for 23andMe Research, as described above. “Genetic & Self-Reported Information”* refers to:
- Your genetic data
- Information you enter into surveys, forms and other features labeled with the 23andMe Research logo or
- Your age and ethnicity
- Data from a third party that you authorize us to use for research
- 23andMe Research is open-ended: we may inform you of new surveys and research opportunities as they are added. We may also invite you to participate in specific studies based on information you’ve previously provided. We use routine communication methods to inform you of research opportunities. We may send you email invites and/or notifications in your account or on your mobile device.
- When 23andMe conducts studies on sensitive research topics, you will be provided additional information to help you decide whether you want to take part in this research.
- Depending on the research activity, we may or may not provide you with compensation for your time. For some longer or more involved research activities, cash equivalents, or charitable donations may be provided as compensation. There is no cost to take part in this research.
- Some 23andMe Research may be sponsored by or conducted in collaboration with third parties, such as non-profit organizations, pharmaceutical companies, or academic institutions whose additional expertise and/or resources can help 23andMe make important discoveries.
- Sometimes research discoveries lead to products or inventions that have value if they are made or sold. In situations where your information contributed to an invention or product that profited 23andMe or any of its research collaborators, you will not receive any financial benefits.
- If you have elected to have your saliva sample stored by 23andMe, we may also use the results of further analysis of your sample in 23andMe Research. For example, we may conduct whole genome sequencing, which allows researchers to study genetic information more thoroughly.
- Your child may take part in 23andMe Research if your child gives assent to participate, and a parent or legal guardian authorizes 23andMe to use their Genetic and Self-Reported Information for research. Here are some talking points to help you discuss 23andMe Research with your child.
*You can learn more about Genetic Information, Self-Reported Information, Registration Information and other Personal Information in our Privacy Statement.
How is my privacy protected?
23andMe uses a range of physical, technical, and administrative measures to protect your information. We regularly review and improve our privacy and security practices to help ensure the safety of your information. These practices include, but are not limited to, the following:
- 23andMe research analyses are conducted with information that has been stripped of your identifying Registration Information (name, address, email address, user ID, password, or credit card). Your contact information may be used to communicate with you but are not analyzed in combination with your Genetic and Self-Reported 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.
- We have obtained a Certificate of Confidentiality from the National Institutes of Health (NIH). If an external party demands access to data collected for 23andMe Research, the CoC may allow 23andMe to refuse to release the data.
- 23andMe maintains an internationally recognized security standards certification for our robust data privacy and security systems.
- All 23andMe employees are trained on how to work with human research participants, and 23andMe researchers receive additional training on how to conduct research responsibly.
Who will have access to my information?
Outside of 23andMe:
- We may share summaries of research results, which do not identify any particular individual, with qualified research collaborators and in scientific publications. We will not ask you for separate permission every time we share summary information with qualified research collaborators or publish in scientific journals.
- We may share information with our ethics review board (also called an Institutional Review Board or “IRB”) and other agencies to maintain our compliance, or as otherwise required by law.
- 23andMe researchers who conduct analyses will have access to Genetic and Self-Reported Information, but not to your identifying Registration Information.
- For further details on 23andMe’s other uses of Personal Information, see our Privacy Statement.
What are the benefits and risks of taking part in 23andMe Research?
You will not receive any direct benefits by taking part in 23andMe Research. For example, we
will not give you individual results about your genetics or health risks that we learn through
23andMe Research. You may, however, receive indirect benefits:
- Sometime in the future, you or others, including people who share your ancestry or health characteristics, may benefit indirectly from 23andMe Research discoveries, such as those that improve 23andMe product or services offerings or contribute to ways to prevent and treat disease.
- By taking surveys you may learn about 23andMe's Research findings. We may also let you know which publications you’ve contributed to and provide you with periodic updates on the research.
- Discomfort: Some survey questions or data comparisons may make you uncomfortable.
Privacy: Although 23andMe has strict policies and practices in place to minimize the risk of a
breach, there is a very small risk that a breach of your Personal Information can happen.
- In the event of a breach, your Genetic Information and/or Self-Reported Information could be exposed outside of 23andMe. In some cases, a breach could also expose information about family members who share some of your DNA.
- There is a remote chance that an individual could be re-identified from summary information, including from published research results. In theory, a bad actor who has obtained your genetic data could compare your data to the summary research results and determine that you had participated in a particular study, and could possibly learn things about you related to the study.
- There may be additional risks to participation that are currently unforeseeable.
Can I change my mind?
- 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. If you withdraw your consent, 23andMe will prevent your Genetic and Self-Reported Information from being used in new 23andMe Research initiated after 30 days from when we receive your request from your Account Settings.
- There is no penalty for choosing not to give consent or for withdrawing from 23andMe Research. You will not lose any benefits you receive by being a 23andMe customer, including access to your Genetic Information and to the Personal Genetic Service.
- You may also stop participation by closing your Personal Genetic Service account. Requests for account closure can be made directly within your Account Settings.
- If you choose not to give consent for 23andMe Research, your Genetic and Self-Reported Information may still be used for other purposes, such as to improve the 23andMe product and services, as described in our Privacy Statement.
- Your participation in 23andMe Research could be terminated without your consent in the case of a transfer of ownership of 23andMe (described in our Privacy Statement), or termination of 23andMe products or services (described in our Terms of Service).
Who do I contact if I have questions?
If you have general questions and need help with 23andMe's product or services, please contact:
- 23andMe Customer Care
- 1-800-239-5230 (9 AM-12 PM, 1-4 PM, Pacific Time)
If you have any questions or concerns about 23andMe Research, if you suffer a research-related injury, 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 for this study.
- Salus IRB (formerly Ethical & Independent Review Services)
- Email: email@example.com
- Reference study #: 10044
You can also print a copy of this consent document if you would like to review it in paper form.