Research Consent Document
Consent Document - Key Points
23andMe aims to make and support scientific discoveries and publish those discoveries in scientific journals. We invite you to take part in this research, which we call 23andWe. To get started you must agree to the terms in our full consent document (below). Here are key points of that document:
How do I take part in 23andWe research?
- Take surveys or otherwise enter information about yourself into the 23andMe website. You get to choose which surveys to take and which questions to answer.
Which of my personal information is used for research?
- Your genetic data and any other personal information you enter into the website, except for your Registration Information (name, contact information, and credit card information), may be analyzed in the research.
- Your name and contact information may be used to communicate with you but are not analyzed in combination with your genetic and other personal information.
Who gets to see my personal information?
- 23andMe’s privacy statement outlines who does and does not get access the personal information of 23andMe customers; here we list the additional individuals who will get access if you consent to take part in research.
- Within 23andMe: 23andMe researchers who conduct analyses will have access to your genetic and other personal information, but not to your name, contact, or credit card information. 23andMe researchers who conduct interviews will have access to names and contact information, but only to very limited genetic or other personal information.
- Outside of 23andMe: 23andMe may share some data with external research partners and in scientific publications. These data will be summarized across enough customers to minimize the chance that your personal information will be exposed. As required by law, there are other agencies that 23andMe may need to share the information with.
Will I benefit from this research?
- By taking surveys you may learn how your answers compare with those of others.
- Sometime in the future you or your family may benefit indirectly from research discoveries made by 23andMe or its research partners.
What are the risks of taking part in this research?
- There is a very small chance that someone with access to the research data or results could expose personal information about you. 23andMe has policies and practices in place to minimize the chance of such an event.
Can I stop taking part in 23andWe research?
- Yes, you can withdraw from 23andMe research at any time. Any of your data that have been entered into a study already cannot be withdrawn, but your data will not be included in studies that start more than 30 days after you withdraw.
Full Consent Document
One of 23andMe's missions is to make and support meaningful scientific discoveries by enabling its customers to participate directly in research. 23andMe has enrolled tens of thousands of participants from among its customers in this research, which we call 23andWe. Specifically, 23andWe refers to research aimed at publication in peer-reviewed journals and research funded by the federal government (such as the National Institutes of Health - NIH). The 23andWe study, which has yielded over a dozen scientific articles, 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
For further details on 23andMe's other uses of personal information, see our Privacy Statement.
23andMe seeks your voluntary participation in 23andWe.
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 researchers 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 researchers 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.
For your participation, monetary or cash equivalents such as discounts on future 23andMe service purchases (up to a value of $30 per half hour of expected time) may be provided as compensation for your time.
Your participation in this research project is completely voluntary.
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's Privacy Statement outlines how the company protects your privacy while conducting business, such as providing our services to you. 23andMe uses a range of physical, technical, and administrative procedures to protect the privacy of your personal information, including your genetic data and your survey responses.
If you agree to this Consent Document, 23andMe can use your information in additional ways. Specifically, 23andMe researchers can use your data for research that will be published in scientific journals, or that is sponsored by the National Institutes of Health and certain other organizations.
Just as 23andMe aims to minimize the chances of a privacy breach while conducting its business, 23andMe researchers aim to minimize the chances of a privacy breach while conducting research. Here are the main ways we do that:
- The 23andMe researchers who conduct the statistical analyses do not have access to Registration Information (name, address, email address, user ID, password, or credit card) of customers.
- 23andMe researchers who conduct interviews have access to names and contact information of participants, but only to very limited genetic and other personal information.
- To minimize the chance that an external person can determine that any particular customer is part of a study, 23andMe researchers either:
- All 23andMe employees are trained on how to work with human research participants. 23andMe researchers are also trained on how to conduct research responsibly.
In addition, 23andMe has obtained a Certificate of Confidentiality from the National Institutes of Health (NIH). In some cases, if an external party demands access to customer data, 23andMe can exclude from release the data of customers who have consented to research.
The Certificate of Confidentiality cannot be used to resist a demand for information from personnel of the United States Government that is to be used for auditing or evaluation of federally funded projects or for information that must be disclosed in order to meet the requirements of NIH or the Institutional Review Board (IRB). The NIH and IRB have the right to audit this study’s data, including information that identifies you.
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 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
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. In addition, if you or a family member has genetic data linked to your name or your family member's name in a public database, someone who has access to your 23andMe genetic data might be able to link that data to your name or your family member's name through the publicly available genetic data. 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 researchers publish results from this ongoing study, they may include your Genetic & Self-Reported Information but only as part of a summary across enough people to minimize the chance that your personal information will be exposed. 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 other personal information.
- 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 researchers 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 and need help with 23andMe's service, please go to the following web page:
If you have any questions or concerns about the 23andWe 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
If you have any questions or concerns about research that you do not wish to discuss with 23andMe, click here to contact the following independent, impartial research review board:Read the previous version of the document.