Research Consent Document
We require that each person reads, acknowledges, and agrees to the terms in this Consent and Legal Agreement before his or her sample will be processed.
You are reading this because you have decided to use the 23andMe service to help you access and understand your genetic information. We want you to understand the context of the genetic information you will access as well as potential consequences of knowing it. Once you obtain your genetic information, the knowledge is irrevocable.
While certain genetic markers—SNPs in this case—are associated with a higher incidence of certain diseases or health conditions in certain populations, accessing your genetic information through 23andMe does not translate into a personal prediction. This is the case for several reasons. First, genetic information is usually just one factor in whether a person develops a disease or other health-related traits. Other factors include environmental conditions and how your genetic profile responds to these external conditions (gene/environment interactions). Second, our current understanding of the genetics of any particular disease or condition may be incomplete. For example, we may know that a particular SNP in a gene is associated, by proxy, with a disease, but not that a yet-unidentified SNP in another gene is also associated with that disease. Even after identifying a second, third or even fourth gene associated with a genetically complex disease, it's still unclear if these genes work in concert or are independent players. SNP associations also don't necessarily identify the biologically relevant factors involved in a disease, but may simply be locational markers that flag a particular genetic involvement. Third, gene/disease associations are typically based on ethnicity, and studies are generally conducted in limited populations. That is, 1) they may provide understanding of a disease in a specific population, but not to any single member of the population, and 2) the associations may not have been studied in many world populations and may not apply in the same or similar ways across populations.
The genetic information provided by 23andMe about potential health conditions should not be used to estimate your overall risk of future disease. The available genetic information could indicate higher risk and you might never get the disease. The available genetic information could indicate lower or average risk and you might already have or get the disease in the future. Furthermore, the 23andMe Personal Genome Service is not a test or kit designed to diagnose disease or medical conditions, and it is not intended to be medical advice. If you have concerns or questions about what you learn through 23andMe, you should contact your physician or other appropriate professional.
While we measure many hundreds of thousands of data points from your DNA, only a small percentage of them are known to be related to human traits or health conditions. The research community is rapidly learning more about genetics, and an important mission of 23andMe is to conduct and contribute to this research. By obtaining 23andMe's services, you are agreeing to contribute your genetic information to our research efforts as described below. These efforts could translate into meaningful information about your genetics.
You should not assume that any information we may be able to provide to you, whether now or as genetic research advances, will be welcome or positive. You should also understand that as research advances, in order for you to assess the meaning of your DNA in the context of such advances, you may need to obtain further services from 23andMe.
You may learn information about yourself that you do not anticipate. This information may evoke strong emotions and has the potential to alter your life and worldview. You may discover things about yourself that trouble you and that you may not have the ability to control or change (e.g., your father is not genetically your father, surprising facts related to your ancestry, or that someone with your genotype may have a higher than average chance of developing a specific condition or disease). These outcomes could have social, legal, or economic implications.
The laboratory process may result in errors. A small, unknown fraction of the data generated during the laboratory process may be un-interpretable or incorrect. For more information concerning the accuracy of our process, click here.
You should not change your health behaviors on the basis of this information. For most common diseases, the genes we know about are only responsible for a small fraction of the risk. There may be unknown genes, environmental factors or lifestyle choices that are far more important predictors. If your data indicate that you are not at elevated genetic risk for a particular disease or condition, you should not feel that you are protected. The opposite is also true; if your data indicate you are at an elevated genetic risk for a particular disease or condition, it does not mean you will develop the disease or condition. In either case, if you have concerns or questions about what you learn through 23andMe, you should contact your physician or other appropriate professional.
Genetic research is not comprehensive. Many ethnic groups are not included in genetic studies. Because interpretations provided in our service rely on these published studies, some interpretations may not apply to you.
Future scientific research may change the interpretation of your DNA. In the future, the scientific community may show previous research to be incomplete or inaccurate.
Genetic data you share with others could be used against your interests. You should be careful about sharing your genetic information with others. Currently, very few businesses or insurance companies request genetic information, but this could change in the future. While the Genetic Information Nondiscrimination Act was signed into law in the United States in 2008, the protection it will provide against discrimination by employers and health insurance companies for employment and coverage issues has not been clearly established. In addition, GINA does not cover life or disability insurance providers. Some, but not all, states and other jurisdictions have laws that protect individuals from this kind of conduct. (For some examples of protective legislation and a description of the Genetic Information Nondiscrimination Act, click here.)
Genetic information that you choose to share with your doctor may become part of your medical record and through that route be accessible to health care providers and insurance companies in the future. Genetic information that you share with family, friends or employers may be used against your interests. Even if you share genetic information that has no or limited meaning today, that information could have greater meaning in the future as new discoveries are made. If you are asked by an insurance company whether you have learned genetic information about health conditions and you do not disclose this to them, this may be considered to be fraud.
Account Information: When you sign up for our service, 23andMe will collect and store information about you. This information includes contact and payment information and is maintained separately from your genetic data and is not used in genetic research. Account information will be used to transact your purchase and may be used to improve our services and create new features. See our Privacy Statement for further details on data usage and protection.
Genetic Data: The laboratory processing your saliva sample will analyze your DNA to determine your genetic information. The laboratory will not analyze your saliva for any biological or chemical components, markers or agents other than your DNA. The laboratory will not have access to your name or your other personal information. A unique bar code will allow 23andMe to link genetic data derived from your sample to your account. Unless you decide to biobank or store your saliva sample or DNA at our laboratory, after analysis, your remaining DNA and saliva samples will be destroyed.
Security: 23andMe employs robust security measures to protect against unauthorized access to or unauthorized alteration, disclosure, or destruction of data. Our security program includes regular audits of our security measures and systems. As with any security system, we cannot guarantee that our systems can never be breached.
Access: Except as described in this Consent and Legal Agreement, external parties will not be given any of your information without your consent, except as required to comply with legal requirements under applicable laws. Even if we are legally compelled to provide information, we will attempt to notify you before providing your information to external parties unless prohibited by law.
Account Deletion: You have the right to delete your genetic information from our systems. Within thirty (30) days of receiving your written request, we will delete your account, and your information will not be included in any future research, including future research by other organizations. Any research conducted prior to the end of the thirty (30) day period following receipt of your request will not be altered or halted. Once your account is deleted it will not be retrievable. For purposes of clarity, any user-generated content you contribute will not be deleted and your genetic information associated only by barcode may be retained at the laboratory. Click here for more information.
23andMe Sponsored Research: We will analyze your genetic and other voluntarily contributed personal information as part of our scientific research with the purpose of advancing the field of genetics and human health; your account information will never be associated with this research. We may also analyze your genetic and other contributed personal information for the purpose of reviewing, improving, and expanding our features and services. We may ask you questions and you may choose to give us information about yourself through surveys or other features on our website. Contributed personal information might include age, sex, geographic ancestry, attitudes and health conditions you have experienced. Providing such contributed personal information is entirely voluntary and is not required as part of your use of this Service.
Collaborative Research: 23andMe may enter into partnerships with other investigators and organizations—non-profit and/or commercial—that conduct scientific research. Prior to embarking on any such projects, 23andMe will establish a research advisory committee to guide such collaborations. 23andMe may grant researchers associated with partner organizations access to aggregated data from our database of genetic and other contributed personal information for specific research queries. 23andMe will only provide individual level data to external researchers upon individual consent from each customer. In addition, we will ensure that such research partners obtain clearance from institutional review boards, as appropriate, and agree to maintain confidentiality consistent with our privacy statement. Once information is shared with research partners, we cannot guarantee that it will be destroyed upon request.
Publication: One of our goals is to advance knowledge in the field of human genetics. Therefore 23andMe intends to publish robust results of scientific studies that we conduct or that are conducted with our research partners. 23andMe will not include any element of your account information in scientific publications.
Together with all of the terms and conditions in this Consent and Legal Agreement, by clicking below:
You understand that information you learn from 23andMe is not designed to diagnose, prevent, or treat any condition or disease or to ascertain the state of your health and that you understand that the 23andMe services are intended for educational, informational, and research purposes only. You acknowledge that 23andMe urges you to seek the advice of health professionals if you have questions or concerns arising from your genetic information.
You give permission to 23andMe, its contractors, and assignees to perform genotyping services on the DNA extracted from your saliva sample and to disclose the results of analyses performed on your DNA to you and others you specifically authorize.
You represent that you are eighteen (18) years of age or older.
You are guaranteeing that the sample you provide is your saliva; if you are completing this consent form on behalf of a person for whom you have legal authorization, you are confirming that the sample provided will be the sample of that person. If you are a customer outside the U.S., by providing your sample, you confirm that this act is not subject to any export ban or restriction in the country in which you reside.
You agree that your saliva sample and data may be transferred and/or processed outside the country in which you reside.
You are warranting that you are not an insurance company or an employer attempting to obtain information about an insured person or an employee.
You are aware that some of the information you receive may provoke strong emotion.
You take responsibility for all possible consequences resulting from your sharing access to your genetic and other contributed information.
You understand that your genetic and other contributed personal information will be stored in 23andMe research databases, and authorized personnel of 23andMe will conduct research using said databases.
You acknowledge that 23andMe may enter into partnerships with other non-profit or commercial organizations to conduct scientific research on data collected by 23andMe. You give permission to 23andMe, its assigns, and its non-profit and commercial partners conducting scientific research to publish results of research as described herein.
You understand that you should not expect any financial benefit from 23andMe as a result of having your genetic data processed or shared with research partners, including commercial partners. Please see our terms of service for a complete understanding of financial and other terms applicable to our services.
You may not—and you may not permit anyone else to—copy, modify, create a derivative work of, reverse engineer, decompile, or otherwise attempt to extract the source code of the 23andMe proprietary software or any part thereof.
You agree that this Consent and Legal Agreement will be governed exclusively by the laws of the State of California, and that any disputes arising from this Consent and Legal Agreement will be resolved by binding arbitration in San Francisco, California under the Rules of the American Arbitration Association.
You will hold harmless 23andMe, its employees, contractors, successors, and assigns from any liability arising out of the use or disclosure of any information that is obtained from genotyping your saliva sample, that is disclosed to you consistent with our privacy statement and resulting from any third-party add-ons to tools we provide. In addition, if you choose to provide your genetic or other contributed personal information to third parties-whether individuals to whom you facilitate access, intentionally or inadvertently, or to third parties for diagnostic or other purposes-you agree to hold harmless 23andMe, its employees, contractors, successors, and assigns from any and all liability arising from such disclosure or use of your genetic or other contributed personal data. Please see our terms of service for a complete understanding of other terms applicable to our services.
You agree that you have the authority, under the laws of the state or jurisdiction in which you reside, to provide this consent.
Each person also needs to read and agree to this provision before their sample will be processed:
Waiver of Property Rights: You understand that by providing your sample and having your genetic data processed, you acquire no rights in any research or commercial products that may be developed by 23andMe or its collaborating partners. You specifically understand that you will not receive compensation for any research or commercial products that include your genetic or other contributed personal data.