This document fully outlines what you are consenting to when you order a kit from Seeq.
Seeq aims to give everyone access to their genomic information. The app was developed by the Pickrell Lab at the New York Genome Center. We want to enable you to learn more about your DNA, share what you learn with your friends and family, and participate in scientific discoveries.
We will send you a saliva collection kit (i.e. spit-kit) for providing your sample, which you return to us in a pre-paid mailer. Participating in this study may require you to pay for sequencing and analysis of your sample. This cost may change during the course of the study but will not exceed $100.
In order to process your payment and send you a kit, we will need to ask for your credit card information and address. We do not store your credit card information, but we do store your address in case of shipping or billing problems. We do not require your name--if you wish to keep your name anonymous from the research team, you are welcome to provide a username and email address that are not easily linked to your identity.
After we receive your kit, we will extract genomic material from your saliva, sequence it, and perform a number of analyses including analysis of your ancestry, microbiome, and different traits. After sequencing, you may request your uninterpreted sequence data and it will be provided to you. All results are for educational and research use only; we will not return any clinical or medical information to you, and the sequencing methodology we use is not appropriate for clinical uses. If you are interested in medical uses of genomics, please contact your doctor and obtain a clinically-validated test.
We want to learn about the causes of different traits, so we will compare your genetic data to measurements you take in the app (for example your picture or a voice recording) and to your answers to various survey questions. This includes measurements and survey answers you have provided in the app prior to giving consent for genomic research. We will continuously monitor your usage of the app for research and quality control purposes.
The Seeq study is open-ended: new surveys or features may be added on a continuing basis. If new features are added or new studies initiated, you may see an announcement when you open the app or receive an occasional email update. No spam, we promise!
Some features or questions presented in Seeq may cover potentially sensitive topics such as sexual orientation, illegal behavior, suicide, or HIV status. When Seeq conducts studies on such sensitive topics, you will be provided additional information to help you decide whether you want to participate in research on these topics.
We will store a sample of your genomic material; future features or research may rely on new analysis methods that have yet to be invented. We may store a sample of your saliva for a limited time to ensure that our extraction procedures were successful.
If any new information is learned about this study that might affect your willingness to stay in this study, you will be informed about it promptly.
This study has no defined end date, though we may terminate the study for financial or logistical reasons at any time. You can withdraw from this study at any time by withdrawing your consent from within the app. Any of your data that have already been analyzed cannot be withdrawn, but your data will not be included in future analyses from the time your consent is withdrawn.
Dr. Joseph Pickrell is the investigator in charge of the study at the New York Genome Center. If you have questions, please email us: firstname.lastname@example.org.
There are no physical risks in participating in this study but there may be information risks.
We will provide you with your genetic information, and will interpret it to tell you about your ancestry, microbiome, and traits. You might learn unexpected things about yourself or your family. For example, you might find you have an unexpected ethnic background, discover that you have a predisposition to an undesirable trait, or identify mistaken paternity in your family. For some, such information is empowering; for others, these findings may cause anxiety and discomfort. Please think about how you and your family might react to situations like the ones listed above before agreeing to participate in this study.
We will ask you questions about yourself and your family. Some of these questions may make you uncomfortable. You can decline to answer any question or decline to use any feature for any reason. If you would like to keep your identity anonymous from the research team, you should decline to provide photos or voice recordings that may be personally identifiable.
Your data belong to you, we thank you for sharing it with us. We will do our best to protect any information you provide to us. Specifically:
Despite our efforts, we cannot guarantee that your data will never be released outside of these conditions (for example if the security of our systems is breached), which could have serious implications in some scenarios. We estimate that the risk for such a breach is low but not zero.
If you withdraw from Seeq, we will no longer use your data for research, but we will not destroy your sample nor do we delete your data. Furthermore, after you remove information from your account, copies of that information may remain viewable elsewhere if it was shared with other users, who may have copied or stored this information. In the event of a security breach, your data may become available even if you have withdrawn consent or removed information from your account.
If you have any questions about your rights as a research subject or complaints regarding this research study, or you are unable to reach the research staff, you may contact a person independent of the research team at the Biomedical Research Alliance of New York Institutional Review Board by phone at 516-318-6877 or online at www.branyirb.com/concerns-about-research.
I have read about this research study. All my questions about the study and my part in it have been answered. I understand that my participation is voluntary and I freely consent to be in this research study.
I expressly authorize the collection, processing, use, and disclosure of my data for use as indicated in the "Procedures" and "Confidentiality and Risks" sections.
I permit Seeq to contact me as part of the study. I confirm that the saliva sampled submitted to Seeq is my own.
I understand that the research in this study may lead to new products, research tools, or inventions that have financial value. By accepting the terms of this consent, I understand that I will not be able to share in the profits from future commercialization of products developed from this study.
I understand that the information served by Seeq is only for educational and research purposes and it is experimental by nature. It is not intended to diagnose, treat, cure, or prevent any disease.
By accepting the terms of this consent form I have not given up any of my legal rights. I am free to withdraw my consent at any time and free of charge without providing a reason. I understand that results may be published and cannot be destroyed.