ANCESTRYDNA INFORMED CONSENT Thank you for considering participating in our research project. 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 participate in this research project if you don't want to. This Informed Consent 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 and its affiliated companies, including each of their respective websites and services ("us" or "we"). We believe in being transparent and want you to understand this consent form, so 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, your options, and whether or not to participate. 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 available on our website at http://dna.ancestry.com/legal/consentAgreement. 1. What Is The Research Project? The Ancestry Human Diversity Project collects, preserves and analyzes genealogical pedigrees, historical records, surveys, family health data, medical and health records, genetic information, and other information (collectively, "Information") from people all around the world in order to conduct research studies to better understand, among other things, human evolution and migration, population genetics, population health issues, ethnographic diversity and boundaries, genealogy, and the history of our species ("The Project"). Researchers hope that the Project will be an invaluable tool for a wide range of scholars interested in genealogy, anthropology, evolution, languages, cultures, medicine, and other topics and that the Project may benefit future generations. The Informed Consent explains: What information will be collected? How will the Information be used? How do you take part in the Project? What are the costs and will you receive compensation? What are the benefits of participating? Are there any risks to participating? How will we protect the Information? Could your participation end without your consent? How can you withdraw from the Project? Further Information. 2. What Information Will Be Collected? The Project will collect Information (as defined above) consisting of genealogical, genetic, and health information. "Genealogical information" is your pedigree, ethnicity, family history, and other information about you and your family that you provide, gleaned from documents and information on Ancestry.com's family of websites and other locations, or is otherwise publicly available. "Genetic information" is your genotype that is discovered when AncestryDNA processes your saliva, is otherwise provided by you, or is gathered by us with your consent. Genetic information is in your DNA, and it is what makes you different from everyone else. DNA controls things like the color of your hair or eyes and might make you more likely to get certain diseases or affect whether a drug helps you and/or gives you side effects. "Health information" is health-related information provided by you (if you choose to use the AncestryHealth tools and agree by accepting this Informed Consent) such as responses to our family health questionnaire(s), medical conditions, diseases, personal traits, and other information, medical records and electronic health records you either upload or provide consent for our gathering; documents on Ancestry.com's family of websites and other locations; and/or information available via publicly available documents. Each time an individual study is undertaken with a third party researcher or anytime the results of the Project or an individual study are to be published, Information that traditionally permits identification of specific individuals, such as names and birth dates, is removed from the Information. This is done to minimize the possibility that any individual participant can be identified from the Information by any researcher or other individual. 3. How Will The Information Be Used? For each study that involves a third party researcher, Information about you (minus any information that traditionally permits identification of specific individuals, such as names and birth dates) will be combined with information about others (minus any information that traditionally permits identification of specific individuals, such as names and birth dates). In addition, whenever the results of the Project or an individual study are to be published, only data minus information that traditionally permits identification of specific individuals, such as names and birth dates, will be available or published. Discoveries made as a result of this Project could be used in the study of genealogy, anthropology, population genetics, population health issues, cultures, medicine (for example, to identify drug response, health risks, etc.), and other topics. 4. How Do You Take Part In The Project? You have already decided to send in a saliva sample to get information about your DNA from Ancestry.com. The researchers want to know if you will allow the information obtained from this swab to be combined with other people's results for research. To participate in this research project, you will be asked to accept this Informed Consent on this website; accepting the Informed Consent will allow us to use the Information you provide (directly, or by providing consent for us to collect) for the Project. You will also need to read and accept the AncestryDNA Terms & Conditions (as well as the Terms & Conditions of any other of our websites for which you register). If we or a third party wants to conduct a study (1) on topics unrelated to the Project, or (2) using information beyond what is described in this Informed Consent, we will re-contact you to seek your specific approval. In addition, we may contact you to ask you to complete a questionnaire or to ask you if you are willing to be interviewed about the Project or other matters. 5. What Are The Costs And Will You Receive Compensation? You will be responsible for the cost of having your DNA analyzed by sending in a saliva sample, just like you would be if you decide not to participate in the Project. There is no financial cost to you for allowing the information from this analysis to be used in the Project. All we ask is that you have your DNA analyzed and agree to have your Information used for the Project; this will take the same amount of time and effort as having your DNA analyzed on AncestryDNA.com and not participating in the Project. You will not get paid for being in this Project. The sample(s) you share with us for this Project might benefit researchers and others in the future. We will own the results of the Project and any subsequent publication of the results. 6. What Is My Alternative To Participating? This project does not involve treatment for any condition and you will receive your results from AncestryDNA regardless of you participation. Your alternative is not to be in the study. 7. What Are The Benefits Of Participating? Participating in this Project will not benefit you directly. This Project is intended to assist us and other researchers to better understand the human species, so the more Information contributed to the Project, the better the potential results could be. Your individual DNA testing results will not be communicated to you if you participate in the Project, and will not be communicated to your physician or put into your medical records by AncestryDNA. 8. Are There Any Risks To Participating? Your test results may reveal information about you or your biological family (blood relatives), but there are no physical risks for providing a saliva sample and having your sample and Information used in this Project. While the Information that may be shared (through publication or with another entity) in the context of each of the studies under this Project will not contain information that traditionally permits identification of you, such as your name and birth date, people may develop ways in the future that would allow someone to re-engineer the otherwise de-identified data. We do and will continue to work hard to ensure that this does not happen. There may also be additional risks to participation that are currently unforeseeable. Please note that if you are in the United States of America, 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 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 and does not guarantee privacy. 9. What Will Happen To The Saliva Sample? Your sample will not be labeled with your name or other directly identifying information. Your samples will have a code instead. The list that matches the code with your name and information will be stored separately from your samples. Your sample will be kept indefinitely unless you ask the researchers to destroy it. 10. How Will We Protect The Information You Provide? We use a range of physical, technical, and administrative procedures to protect the privacy of the Information. For example, we restrict access to our data center and databases by using industry standard protocols, such as passwords and pass cards, encrypted Internet connections to the AncestryDNA website, and all AncestryDNA Internet computer servers have firewall protections in place. As Information is shared between and among us, it will be protected by encryption. Additionally, when we collaborate with external third parties as part of the Project, these parties will only have access to pooled information from which information that traditionally permits identification of specific individuals, such as names and birth dates, has been removed. We will never purposely release Information along with direct identifiers (such as your name, birth date, phone number, and the like) 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 Project without your permission. The Information used in the Project will be segregated from other information and only specifically authorized individuals will have access to this Information. Be aware that records including Information (such as health and other Information as described above) will be shared and copied as needed for the Project. 11. Could Your Participation End Without Your Consent? Yes. We may terminate the Project in our discretion without your consent. We will protect the Information even after the Project is terminated or the data you provide is no longer in use. 12. How Do You Withdraw From This Project? Participation in this Project 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 you provided by sending a request to consent@ancestryDNA.com. There will be no penalty to you, and you will continue to be able to use our websites and services as before. We will cease using the Information you provided for the Project and any future studies promptly after receipt of your request. Due to the removal of information that traditionally permits identification of you, such as your name and birth date, any research using the Information that has already begun, studies that have been performed completely, and any study results or findings that have been published prior to this date cannot be reversed, undone, or withdrawn. 13. What If You Or Your Family Member Work For Ancestrydna Or Ancestry.com? Employees and their family members do not have to participate in this Project. No one should influence or pressure you to participate in the Project. An employee or his/her family member's decision to participate in the Project, or to withdraw from the Project at any time, will not affect the employee's job or job benefits. 14. Further Information You can contact AncestryDNA at the address, phone number, and fax number below if you have any concerns, complaints, or questions about the Project; Within the U.S.: AncestryDNA Member Services Memberservices@ancestrydna.com 360 W. 4800 N. Provo, Utah 84604 1-800-262-3787 or fax to 801-705-7001 If you have questions about what it means to be in a research study, you can also call Quorum Review (a research ethics board that reviews this Project) at 888-776-9115, or visit the Quorum Review website at www.quorumreview.com.
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