AncestryDNA Informed Consent
Effective Date: December 14, 2017
Thank you for considering participation in scientific research to help advance the study of human genetics, genealogy, anthropology and health. We are hopeful that this research will help scientists better understand population history, human migration and improve human health. This Informed Consent relates to research that may be performed by AncestryDNA, a third-party researcher or in collaboration between AncestryDNA and a third-party researcher (as further described below). As to any internal AncestryDNA product development or enhancement work that is not covered by this consent, such development or enhancement is covered by our terms and conditions and privacy statements.
Your consent to participate in this research is completely voluntary and is not required to use any of our products or services. Even if you consent to participate in the research, you may withdraw your consent at any time, but your information will not be removed from research that is in progress or completed. We encourage you to carefully read the full text below before deciding whether to give consent.
The full text of the Informed Consent is below and explains the following:
- What is the Ancestry Human Diversity Project?
- What am I agreeing to if I consent?
- Who conducts the research?
- What data is used?
- How is my Data used and shared if I give consent?
- How is my Data protected?
- If I consent, will AncestryDNA or Collaborators and Collaborator Partners contact me?
- Are there any risks to me?
- Are there any costs if I consent? Do I receive compensation or other benefits if I consent?
- Do I have to consent to the Project?
- What is my alternative to participating?
- Can I withdraw from the Project?
- Who can I contact about the Project?
Full Informed Consent
1. What is the Ancestry Human Diversity Project?
At AncestryDNA, part of our mission is to advance research related to the study of human genetics, genealogy, anthropology and health. One way we do that is to offer you the opportunity to participate in scientific research performed in the United States and in other countries designed to:
- understand human history and migration;
- improve and learn more about human health, such as understanding the genetic links to various diseases or other conditions;
- explore the connection between genetics and human traits; and
- develop new or improved diagnostic tools and therapies to treat diseases or other conditions (together, the “Purpose”).
We refer to all research focused on the Purpose that AncestryDNA or others may do over time as the Ancestry Human Diversity Project (the “Project”). We refer to Ancestry.com DNA, LLC and our affiliated companies collectively as “AncestryDNA,” “us,” “we,” or “our.”
This Informed Consent is not applicable to the use of your data for product research and development. For information on that use, see our applicable privacy statements and terms and conditions.
2. What am I agreeing to if I consent?
By giving consent to participate in the Project, you agree that all information and Biological Samples that you share with us (as further described below) through your use of our websites, mobile applications, and products that exist now, or in the future (our “Services”) can be collected and used for research consistent with the Purpose until the Project is completed or ends (which may be many years from now). Anyone who has activated an AncestryDNA test at any time can voluntarily participate in this Project.
3. Who conducts the research?
Employees of AncestryDNA perform some of the research for the Project. We also work with researchers from other organizations and companies who share our Purpose. This might include academic institutions as well as non-profit and for-profit businesses or government agencies (“Collaborators”).
These Collaborators may also work with other entities to conduct research associated with our Purpose (“Collaborator Partners”). Find out more about our Collaborators here. The research for the Project may be performed solely by us, or by Collaborators with or without help from AncestryDNA researchers or Collaborator Partners. All researchers, whether affiliated with AncestryDNA, our Collaborators, or Collaborator Partners are referred to in this Informed Consent as “Researchers.” AncestryDNA will review all research requests for Biological and DNA Samples.
In some instances, AncestryDNA receives compensation from Collaborators who work on the Project. Some of the researchers who are employees of AncestryDNA also have a significant amount of stock or other ownership in AncestryDNA or Ancestry.com. If you have concerns about this employment and stock ownership, ask for more information via the contact information listed below.
4. What data is used?
When you give consent, Researchers may use all data that you provide to us when you use our Services, including Biological Samples and any data derived from those samples (the “Data”). Data includes:
- Biological Samples: means saliva samples (“Saliva Samples”) and the DNA obtained from the saliva samples (“DNA Samples”) that you voluntarily provide to us now or in the future;
- Genetic Data: Genetic information derived from processing your DNA Sample through genomic, molecular, and computational analyses using various technologies, such as genotyping and whole or partial genome sequencing. Genetic Data is broader than just the results delivered to you when you use the AncestryDNA test and includes a range of DNA markers such as those associated with your health or other conditions;
- Self-Reported Health and Trait Data: Information that you voluntarily share with us about the health, medical conditions, diseases, lifestyle or other traits of you and your family members, for example through the family health history tool or by answering questions on our Services;
- Family Tree Data: Information that you voluntarily share with us about yourself and family members when creating family trees, such as genealogical data, pictures and birth dates. Family trees you mark as “private” are not used for the Project;
- Other Data about you: information that you share with us when you register, create a profile, or use your account, and information we obtain from other sources, such as publicly available genealogical data or demographic information; and
- Additional Data that may be shared in the future: other information you voluntarily share with us as we expand our Services, such as biosensor data recorded by mobile phones or activity trackers or health and wellness data collected from other devices. You are under no obligation to share additional data with us. However, if you do and you have given consent to participate in the Project, it may be used by the Researchers.
We take your privacy seriously and value the trust you put in us when you allow us to use your Data. Our privacy statements describe how we handle your Data and our compliance with applicable laws for cross- border transfers of Data. As part of the Project, Researchers outside the United States may access and use your Data. If this occurs, those further cross-border transfers of Data will be made in compliance with the mechanism described in our privacy statements. For more information, refer to our Privacy Center.
5. How is my Data used and shared if I give consent?
If you decide to participate, the Researchers may use your Data, including your DNA Sample, for:
- research that is consistent with our Purpose; and
- publication of research results in scientific or medical journals and in other publications and presentations. Names, contact information and other common identifying information is always removed prior to making any research public.
Data and Biological Samples, may be shared with Collaborators and Collaborator Partners, but will be shared without your name, contact information or other common identifying information. When your Biological Sample is shared, it is labelled only with a code.
When we collaborate with government agencies on research, we take all necessary steps to protect the privacy and integrity of your Genetic Data and Biological Samples in accordance with laws and regulations pertaining to government funded research. In some instances, if we partner with, or our research is funded by, certain U.S. agencies like the National Institutes of Health, we may be required to contribute certain Data to a national database that will be accessible by other researchers. In the event such contribution is required, we will only provide Data that has had identifying information removed in accordance with U.S. federal regulations.
Your Data may also be shared with others who review the quality and safety of the research (for example, the U.S. Food and Drug Administration, other regulatory agencies, and Quorum Review, an institutional review board, which is a group of people who review research studies to protect the rights and welfare of research participants). We will never knowingly disclose or interpret your Data for use by employers or insurers for employment or insurance purposes.
6. How is my Data protected?
As described in our privacy statements, we use multiple layers of physical, technical, and administrative procedures to protect your Data from unauthorized access while conducting our business. These same procedures are used by us to protect your Data used in the Project. In addition, we require our Collaborators and Collaborator Partners to use similar physical, technical, and administrative procedures to protect the Data and Biological Samples we share with them.
7. If I consent, will AncestryDNA or Collaborators and Collaborator Partners contact me?
We, AncestryDNA, may contact you from time to time to request additional information for the Project, like a survey about your eye color or caffeine consumption, or even a new DNA sample. You are not required to respond to any requests from us about the Project – the choice is yours. If you do not respond or do not want to provide additional materials for the Project, we may continue to use your Data and Biological Samples as permitted by this Informed Consent but for no additional purpose.
Also, if we or a Collaborator wants to use your Data or DNA Samples in a manner beyond what is described in this Informed Consent or to conduct research unrelated to the Purpose, we will first contact you to see if you’re interested in hearing about this new research opportunity and if you are interested in possibly providing additional informed consent.
8. Are there any risks to me?
There are no physical risks involved with providing a DNA Sample and having your Data used in this Project. There are some potential risks to participating in the Project as follows:
- Data about you could become public as the result of a security breach. Although we have strong policies and processes in place designed to minimize the possibility of a security breach (see the controls described above) and we require our Collaborators and Collaborator Partners to have similar controls, we cannot provide a 100% guarantee that a breach will never happen.
- When Researchers publish results from the Project, such results may include your Data, but only as part of aggregated results across many people to minimize the chance that your personal information is identified. But it is possible that third parties could identify you from research that is made publicly available, for example if they are able to combine your Genetic Data with other information about you that is available to them that links your Genetic Data to your name or other common identifying information. However, identification of your individual data would be extremely difficult, because it would be published as part of an aggregated summary of information for many people and without any common identifying information.
- When Biological Samples are physically transferred from us to Collaborators, there is a potential risk that the samples could be lost or stolen while in transit or storage. We take precautions to reduce the likelihood that this will happen and your Biological Samples are not transferred with your name or contact information.
- If we were to provide you with information about your Genetic Data, you may learn information about you or your genetic relatives that you do not expect or that makes you uncomfortable, such as potential health risks.
If your Data is somehow made public or made available through a security breach, it may be used to identify you, and may negatively impact your ability to obtain certain types of insurance coverage, or used by law enforcement agencies to identify you if they have additional DNA data to compare to your Data. In addition, if you or a family member has Data linked to your name or your family member's name in a public database, someone who has access to your Data might be able to link that data to your name or your family member's name through the publicly available data.
However, in the United States, a federal law called the Genetic Information Non-Discrimination Act (GINA) generally makes it illegal for health insurance companies, group health plans, and most employers to seek your genetic information without your consent, and to discriminate against you based on your genetic information. GINA does not protect you from discrimination with regard to life insurance, disability insurance, long-term care insurance, or military service.
In addition, there are laws in certain states and laws outside the United States that prohibit discrimination against an individual based on genetic data, which further minimize the risk of potential negative impacts to you or a relative through a third party identifying you based on publicly available information and your Data. AncestryDNA will never disclose your Data to insurance providers, employers or law enforcement (unless compelled by valid legal process).
There may be additional risks to participation that are currently unforeseeable.
9. Are there any costs if I consent? Do I receive compensation or other benefits if I consent?
There is no cost to you for the Project.
There is no benefit to you for participating in the Project. Your participation may help advance scientific or medical knowledge. Research results will not be communicated by Researchers to you. The Project will not result in you being treated for or receiving a diagnosis of any health condition. No financial compensation will be provided to you for any commercial developments related to the Project that may be developed by Researchers.
10. Do I have to consent to the Project?
No, your participation is voluntary. No one is required to participate in the Project. If you choose not to participate in the Project, you can still use our Services, including activating your DNA test and receiving your DNA results. We do not consider the participation of an employee, or an employee’s relatives, in the Project when making employment or benefit decisions. No one should influence or pressure you to participate in the Project.
11. What is my alternative to participating?
Your alternative is not to participate in the Project. You will receive your results from AncestryDNA regardless of your participation.
12. Can I withdraw from the Project?
Yes, you can withdraw your consent at any time on the AncestryDNA settings page. Until you withdraw or we end the Project, there is no limit to how long we will use your Biological Samples and Data for the Project. If you withdraw, we will cease using your Data for the Project within 30 days and the Data will not be used in future research. However, Data cannot be withdrawn from research already in progress or completed, or from published results and findings. In those cases, Researchers may have access to such Data about you indefinitely. There is no negative impact to you for withdrawal of your consent, and you will continue to be able to use our Services as before. Withdrawing your consent will not result in destruction of your DNA Sample or deletion of your Data from AncestryDNA products and services, unless you direct us otherwise. If you want your DNA Sample destroyed or your Data deleted from AncestryDNA products and services, we will promptly do so at your request but additional steps are required. Please contact Member Services at the applicable number below for assistance.
This Informed Consent does not have an expiration date. If you do not withdraw consent, it will remain in effect until you withdraw or we end the Project.
13. Who can I contact about the Project?
Please contact us if you have any concerns, complaints, or questions about the Project:
Within the U.S.:
Ancestry.com DNA, LLC
Attn: Member Services
1300 West Traverse Parkway
Lehi, UT 84043
Outside the U.S.:
Ancestry International DNA, LLC
Attn: Member Services
1300 West Traverse Parkway
Lehi, UT 84043
In UK: 0800 404 9723
In Ireland: 1800 303 664
In Canada: 1800 958 9073
Other Locations: + 353 1 765 1596
If you have questions about what it means to be in a research study, or if you have a complaint or a concern that you are not able to resolve with the Researchers, you can also call Quorum Review (a research ethics board that reviews the Project) at 888-776-9115, or visit the Quorum Review website at www.quorumreview.com.
In accordance with applicable law, you may have a right to seek access to, rectification of, or object to use of your Data. You may contact us and your local data protection regulator (if you are in the EU) should you wish to lodge a complaint about our handling of your Data.
We encourage you to print a copy for your records, and this Informed Consent is also available on our AncestryDNA website.