INFORMATION AND CONSENT FORM
We would like you to be part of a research project. This Consent Form gives you information to help you decide if you would like to participate in the research project to be performed by Ancestry.com DNA, LLC ("AncestryDNA," "us" or "we"). We believe in being transparent so you can understand this consent form and what we are attempting to accomplish through the research project described below. If you have any questions, please contact us using the information below and feel free to discuss your participation with anyone you choose in order to better understand this research project and your options.
Anyone who is using the AncestryDNA service to find out about their genetic ancestry may ALSO voluntarily participate in this research project. You do not have to be in this research project if you don't want to.
If you are the parent or guardian of a minor who may wish to participate in this research project, you should talk with your child and go over the information in this form with him/her before you and your child make a decision about whether to participate. Your child does not have to participate if he/she does not want to.
Please read this Consent Form carefully; you should print out a copy and keep it somewhere safe. A copy of it is also always available on our website.
1. What Is The Research Project?
The AncestryDNA's Human Genetic Diversity Project ("The Project") will collect, preserve and analyze genetic information, genealogical pedigrees, historical records, surveys, medical and health records and other information (collectively, "Information") from people all around the world in order to better understand human evolution and migration, population genetics, ethnographic diversity and boundaries, genealogy, and the history of our species. Researchers hope that the Project will be an invaluable genealogic tool for future generations and will engage the interest of a wide range of scholars interested in genealogy, anthropology, evolution, languages, cultures, medicine, and other topics. The Information will not be used for medical purposes in the treatment or diagnosis of any individuals.
This Consent Form is consistent with National Institutes of Health Regulations and Ethical Guidelines and explains:
What information will be collected?
How will the information be used?
How do I take part in the research?
What are the costs and will I receive compensation?
What are the benefits of participating?
Are there any risks to participating?
How will you protect my information?
Could my participation end without my consent?
How do I withdraw from the project?
Further information and FAQs.
2. What Information Will Be Collected?
The Project will collect genetic, genealogical and health information that has been stripped of any personally identifiable information in order to study the history of our species. Genes are in your cells, and they are what make you different from anyone else. Some genes control things like the color of your hair or eyes. Genetic information includes your genotype that is discovered when AncestryDNA processes your saliva or is otherwise provided by you to AncestryDNA (the "Genetic Information") when you choose to use the AncestryDNA service. Genealogical information is your pedigree, ethnicity, family history, and other information about you that is either provided by you or is gleaned from publicly available documents on Ancestry.com's website and other locations (the "Genealogical Information"). Health information includes self-reported information from you such as medical conditions, diseases, other health-related information, personal traits, and other information that is either provided by you or is gleaned from publicly available sources, documents on Ancestry.com's website and other resources (the "Health Information").
In all cases for this Project, personally identifiable information about specific study participants (such as name and birth date) is removed from the Information before it is compiled as part of this Project.
The Project will take all of this information (that is already stripped of personally identifiable information) and compile it into a single data summary to minimize the possibility that any individual participant can be identified by any researcher or other individual from the Information.
3. How Will The Information Be Used?
Your Information will be combined with others and used to further the Project's objectives of increasing our understanding of the components that define the history of our species. Discoveries made as a result of this research could be used in the study of genealogy, anthropology, evolution, languages, cultures, medicine, and other topics. In any publication of the studies or results, the genetic, genealogical and health information will be stripped of any personally identifiable information.
4. How Do I Take Part In The Research?
To participate, you need to follow the instructions on our website to submit a Test Kit (i.e., a saliva sample).
Once you send your DNA samples to us, you must then register the Test Kit with AncestryDNA. During that process, you will be asked to click "accept" at the end of this Information and Consent Form which will allow AncestryDNA to use your samples and information for this Research Project. You will also be required to read and accept our Terms & Conditions and Privacy Policy.
Study staff may contact you to ask you to complete a questionnaire or to ask you if you are willing to be interviewed.
5. What Are The Costs And Will I Receive Compensation?
The costs of participating in the Project and having your DNA analyzed are the same as having your DNA analyzed on Ancestry.com and not participating in the Project. You will not be charged for participating in the Project.
You will not get paid for being in this Project. The sample(s) you provide for this genetics Project might benefit AncestryDNA in the future. AncestryDNA will own the results of the research and any subsequent publication of the results. You will remain the owner of the samples you provide. Your samples will be stored until AncestryDNA destroys them.
6. What Are The Benefits Of Participating?
Participating in this Project may not benefit you directly. But your participation in this Project will assist scientists to better understand our species, including our shared anthropology and medical and genetic traits. Your individual DNA results will be communicated to you regardless of whether or not you consent to be in this Project, including information about genetic relatives, geographic origin, and ethnicity.
7. Are There Any Risks To Participating?
Presently, there are no known health risks involved in obtaining a DNA sample. Your test results may reveal information about members of your biological family (blood relatives). But there are no physical risks for having your sample and information used in this Project. As in any research study, there is a risk that private personal or health information could be compromised and/or that other means could be used to identify you. But, as described herein, we will not disclose your personally identifiable information except as required by law. Please note that a federal law called the Genetic Information Nondiscrimination Act (GINA) generally makes it illegal for health insurance companies, group health plans, and most employers to discriminate against you based on your genetic information. Be aware that this new law does not protect you against genetic discrimination by companies that sell life insurance, disability insurance, or long-term care insurance. There may also be additional risks to participation that are currently unforeseeable. We do our best to ensure that this does not happen and you should read our Privacy Policy and FAQs for more information.
8. How Will You Protect My Information?
AncestryDNA uses a range of physical, technical, and administrative procedures to protect the privacy of your Health Information, your Genetic Information, and your Genealogical Information. For example, we restrict access to our data center and databases by using industry standard passwords and pass cards, your connections to the AncestryDNA website are encrypted, and all Internet computer servers have firewall protection in place. Although AncestryDNA may collaborate with external third parties, these parties will only have access to pooled information stripped of personal identifying Information. AncestryDNA will never release your individual information without asking for and receiving your explicit authorization to do so, except as required by law, and your identity will not be disclosed by us in any publication of the research. Genetic Information will be segregated from other information and only specifically authorized individuals will have access to the Genetic Information. These measures are described in more detail in the AncestryDNA Privacy Policy.
Be aware that your study records (which include your genetic and other information as described above) will be shared and copied as needed for the Project.
9. Could My Participation End Without My Consent?
AncestryDNA has the ability to terminate the Project in its discretion without your consent. AncestryDNA will protect your Information even after the study is terminated.
10. How Do I Withdraw From The Project?
Participation in this study is purely voluntary. You can decide not to be in this Project and, at any time, you may choose to withdraw some or all of the Information provided by sending a request to consent@ancestrydna.com. There will be no penalty to you, and you won't lose any benefits. AncestryDNA will cease using your Information for the Project as soon as it reasonably can after receipt of your request. Any research using your Information that has been performed or published prior to this date will not be reversed, undone, or withdrawn.
If you choose not to participate in the Project, you will still receive your genetic information (i.e., genetic relationships/matching and ethnicity).
11. Further Information And Faqs.
You can ask questions about this research Project at any time. You can contact AncestryDNA at any time if you have any concerns or complaints or if you have questions about the Project. If you wish to contact us then you can do so as follows;
AncestryDNA Member Services
Memberservices@ancestrydna.com
360 W. 4800 N.
Provo, Utah 84604
801-705-7000 or fax to 801-705-7001
If you have questions about what it means to be in a research study, you can call Quorum Review (a research ethics board that reviews this study) at 888-776-9115, or visit the Quorum Review website at www.quorumreview.com.
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