Research Consent Document
One of 23andMe's missions is to make meaningful scientific contributions by enabling its customers to participate directly in genetic research. 23andMe asks each of its customers to participate in genetic research and has enrolled tens of thousands of participants from among its customers. 23andMe seeks your voluntary participation in 23andWe, an ongoing research study conducted by 23andMe. The 23andWe study aims to:
- Discover genetic factors behind diseases and traits
- Understand how people react to their personal genetic information
- Learn about human migration and population history through genetics
- Uncover connections among diseases and traits
Specifically, 23andWe refers to research aimed at publication in peer-reviewed journals and research funded by the federal government. For further details on 23andMe's other uses of personal information, see our Privacy Statement.
This document explains:
- What you are agreeing to if you consent
- How you can participate
- How your data will be used
- How we protect your data and keep it private
- The benefits and risks of participation
- Your options and how to withdraw
- Who to contact if you have questions
1. What am I agreeing to if I consent?
Giving consent by checking the appropriate box below means that you agree to let 23andMe investigators use your Genetic & Self-Reported Information for 23andWe research, as described above.
"Genetic & Self-Reported Information" refers to:
- Your genetic data
- Information you enter into surveys and forms
- Information you enter via features labeled with the 23andWe research logo
- Data you authorize us to import for research
- Your age and ethnicity
Self-Reported Information includes any information you submitted prior to giving consent. If you have elected to have your saliva sample stored, we may also use the results of further analysis of your sample in 23andWe research. To protect your privacy, your Genetic & Self-Reported Information does not include identifying Registration Information you provided when you purchased the Personal Genome Service® or created an account (such as name, address, email address, user ID, password, or credit card information).
2. How do I participate?
Participation consists of (1) allowing 23andMe investigators to use your Genetic & Self-Reported Information for research, and (2) entering data about yourself into 23andWe features on the 23andMe website. These features include surveys, individual questions, and other features where you enter information. If you do not feel comfortable providing a piece of information, you may choose not to answer that question. You may choose to take all, some, or none of the surveys.
The 23andWe study is open-ended: new surveys and features may be added to 23andWe on a continuing basis. If new surveys or features are added, you may receive an email update or see an announcement when you sign in to your account. We might invite you to participate in a specific study if your Genetic & Self-Reported Information matches the area of interest.
Your participation in this research project is completely voluntary.
If you are concerned about the use of previously submitted Self-Reported Information in research, you should carefully consider whether you want to give consent for your data to be used in research.
3. How will my data be used in 23andWe research?
Your Genetic & Self-Reported Information may be used to discover links between genetic markers, non-genetic markers, traits, diseases, behaviors and other characteristics; to study human migrations and population history; or to assess how people respond to personal genetic information. Discoveries made as a result of this research could be used to understand the basic causes of disease, develop drugs or other treatments and/or preventive measures, or predict a person’s risk of disease. The topics to be studied span a wide range of traits and conditions, from common to rare. The topics include simple traits such as hair color or freckles, serious diseases such as Parkinson’s disease or diabetes, and other conditions such as migraine headache or response to over-the-counter drugs.
This study may cover potentially sensitive topics such as sexual orientation, illicit drug use or other illegal behavior, or HIV/AIDS status. When 23andMe conducts studies on these topics, you will be provided additional information to help you decide whether you want to participate in research on these topics.
4. How do you keep my data protected and private (whether or not I consent)?
23andMe uses a range of physical, technical, and administrative procedures to protect the privacy of your personal information, your genetic data, and your survey responses. These measures are in place for 23andWe participants and all other users of the Personal Genome Service®. A key protection is that 23andWe investigators do not have access to personally identifying Registration Information (such as name, address, email address, user ID, password, or credit card information). Other measures for protecting your privacy are described in more detail in the 23andMe Privacy Statement.
23andMe may collaborate on research with external parties. As outlined in the Privacy Statement, external parties will only have access to pooled data stripped of identifying information, with the following exceptions:
- 23andMe may release your individual-level data to a third party if we ask for, and receive, your explicit authorization to do so.
- 23andMe’s partners or service providers (e.g. mailing services) may process and/or store your information in order to provide you with 23andMe's services.
- Researchers invited by 23andMe to conduct research may access your individual-level Genetic & Self-Reported Information (but not your name or contact information) for the purpose of scientific research. They may access the data only onsite at 23andMe’s offices, only if they agree to abide by 23andMe's access rules and guidelines, and only if they are supervised by 23andMe employees.
- If we are required to do so by law, 23andMe may release the individual-level information.
- The Institutional Review Board and government officials responsible for monitoring this study may inspect the study records.
5. What are the benefits and risks of participating?
One of 23andMe's missions is to make meaningful scientific contributions by enabling its customers to participate directly in genetic research. If 23andMe publishes study results in peer-reviewed journals, there may be an indirect benefit to you as scientific knowledge increases and/or new drugs or tests are developed.
You may also have the opportunity to acquire one or more of the following, in return for some level of participation in the research:
- Comparison of your personal survey responses to those of all responders.
- Electronic, graphical "badges" that signify you have contributed to one or more research projects
- Monetary or cash equivalents such as discounts on future 23andMe service purchases (up to a value of $30 per half hour of expected time).
23andMe may develop intellectual property, including but not limited to patents, copyrights and trademarks, and/or commercialize products or services, directly or indirectly, based on the results of this study, and in such cases you will not receive any compensation.
There are some potential risks to participating in the 23andWe research study, as described below:
- Some survey questions may make you or your family members uncomfortable.
- Your genetic data, survey responses, and/or personally identifying information may be stolen in the event of a security breach. In the event of such a breach, if your data are associated with your identity they may be made public or released to insurance companies, which could have a negative effect on your ability to obtain insurance coverage. Although 23andMe cannot provide a 100% guarantee that your data will be safe, 23andMe has strong policies and procedures in place to minimize the possibility of a breach.
- When 23andMe investigators publish results from this study, your Genetic & Self-Reported Information may be included within pooled summaries that are made public. Identification of your individual-level data from those summaries would be extremely difficult, but it is possible that a third party that has obtained some of your genetic data could compare that partial data to the published results and infer some of your survey responses.
- As with any online service, if you disclose your account password to others, they may be able to access your account and your Genetic & Self-Reported Information.
- There may be additional risks to participation that are currently unforeseeable.
None of the surveys or other procedures used by the investigators in the 23andWe study is invasive or experimental. The procedures involved do not involve more than the minimal risks described above, and no compensation or treatment is available if injury occurs as a result of participation.
6. Do I have any alternatives? Can I withdraw from this study?
Your alternative is not to participate in the 23andWe research study. If you do not give consent to participate at this time, you will be offered other opportunities to give consent, for example, if you take a 23andWe survey on the website. Even if you do give consent to participate in this study, you may still choose not to take 23andWe surveys or use other 23andWe features. If you choose not to give consent for 23andWe research, your Genetic & Self-Reported Information may still be used for other purposes, as described in our Privacy Statement.
At any time, you may choose to withdraw all or some of your Genetic & Self-Reported Information from 23andWe research by changing your consent status within the 23andMe "Settings" page or by sending a request to the Human Protections Administrator at firstname.lastname@example.org. (23andMe will notify you if additional ways to withdraw consent become available.) You will still be allowed full access to the Personal Genome Service®, but 23andMe will prevent the requested information from being used in new 23andWe research occurring after 30 days from receipt of your request. Any research on your data that has been performed or published prior to this date will not be reversed, undone, or withdrawn. Your Genetic & Self-Reported Information may still be used for other purposes as described in the 23andMe Privacy Statement.
Choosing not to give consent or withdrawing from 23andWe will not affect your access to your Genetic Information or to the Personal Genome Service®.
You may also discontinue participation by closing your Personal Genome Service® account, as described in the Terms of Service. Requests for account closure must be made in writing to 23andMe's business address or via Customer Care.
In addition, the 23andWe study may be terminated without your consent. In the following cases, 23andMe will maintain your Genetic & Self-Reported Information according to the terms of our Privacy Statement.
- Transfer of ownership. If 23andMe undergoes a business transition such as an acquisition or merger, the 23andWe research study may be terminated. In such a case, your information would remain subject to the promises made in any pre-existing Privacy Statement.
- Termination of service. 23andMe may terminate your access to the Personal Genome Service® for any of the five reasons described in the Terms of Service: if a) you have breached the Terms of Service, b) 23andMe is required to do so by law, c) the partner with whom 23andMe offered the Personal Genome Service® to you has terminated its relationship with 23andMe or ceased to offer the service to you, d) 23andMe is no longer providing the Personal Genome Service® to customers in the country in which you are resident or from which you use the service, or e) the Personal Genome Service® is, in 23andMe's opinion, no longer commercially viable. If your access to the Personal Genome Service® is terminated for any of the above reasons, your participation in the 23andWe research study may also be terminated.
7. Who do I contact if I have questions?
If you have general questions about 23andMe's service, please contact 23andMe Customer Care.
If you have any questions or concerns about the study, 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: email@example.com
- Phone: 1-650-963-8999
If you have any questions or concerns about research that you do not wish to discuss with 23andMe, you may contact the following independent, impartial research review board:
- E&I Review Services
- 100 Tamal Plaza, Suite 158
- Corte Madera, CA 94925
- Email: firstname.lastname@example.org
- Phone: 1-800-472-3241